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ASPartOfMe
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01 Feb 2020, 5:25 am

Robert Chapman Ph.D. For Psychology Today

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In recent years, more people interested in neurodiversity advocacy have found themselves faced with the problem of psychiatric validity—the issue of whether the various classifications used in psychiatry (e.g. "autism") are valid.

Its an important question for a number of reasons. For instance, scientifically, the validity of the construct will determine the extent to which it will be helpful for research. While politically, whether, say, autism is a meaningful construct will be important to consider when asking whether a self-advocate's claims to be representative of autistic people are legitimate.

There are at least two key issues when we look at this from a psychiatric perspective. First, each “disorder” classification has many different definitions at any given time—and moreover, the dominant definitions continually change over time in relation to various factors. Second, few (if any) disorders seem to have core underlying traits that explain all the symptoms. Indeed, many people with the same diagnosis have few or even no overlapping traits.

In defence of psychiatric classifications, philosophers of psychiatry have constructed various models and standards of validity. Some draw on similar debates regarding species taxonomy to characterise psychiatric classifications as "fuzzy" cluster concepts that may be meaningful despite having no essential defining trait. Others propose a standard of validity that relies on their medical utility only, thus bypassing some of the issues noted above and instead refocusing on whether any given classification is helpful or not for those so classified as well as for researchers.

Against this, it 's sometimes replied that very few psychiatric classifications actually do seem to be helpful from a medical perspective. Indeed, they may even impede research and confuse patients and clinicians. Given this, organisations such as the National Institute of Mental Health still have argued that we should focus on specific symptoms and one day get rid of broader classifications altogether. This seems to be the direction biological psychiatry is going, at any rate.

The Neurodiversity Perspective

Much of my own research has been on how we can approach this issue from a neurodiversity rather than psychiatric perspective. There is a tendency to think that just because any given classification lacks scientific validity, then we must give up labels such as “autism.” But this isn’t my view.

One key difference is that on the neurodiversity framing, what we reclaim as “neurominorities” are seen more as political identities rather than medical classifications. Given this, while it's clear that they need to be meaningful in some respect, it's not clear that they need to be scientifically valid. For unlike medical disease classifications, there’s no requirement for political identities to be scientifically valid or medically useful at all.

Consider some (partial) similarities with race or gender. The notion that our race classifications are scientifically valid is now widely rejected. But race classifications can be valid and useful as political identities, allowing marginalised peoples to group together and resist oppression. And because those doing this are not purporting to be using such terms (e.g. “black”) in a scientific way, the question of scientific validity doesn’t arise as a potential worry.

Of course, this alone doesn’t answer the question of whether concepts like “autism” are valid or how we should conceptualise them. It only shows that from a neurodiversity perspective, we can use different standards of validity that may not be open to those who see it as a medical classification. In short, we can see them as meaningful social constructs. But then we need to clarify what we mean by "social construct," since there are loads of different kinds of social construct and debates over what terms like this mean (see, e.g. debates in the social metaphysics of race or gender).

Autism as a Serial Collective

For my own research, I’ve found feminist philosopher Iris Marion Young’s notion of gender as a “serial collective” particularly helpful for conceptualising autism in relation to a social model of disability. This model is favoured by neurodiversity proponents and takes disability to be caused by social organisation more than as an individual medical issue.

Like the social model, the notion of a serial collective focuses on the external. The core point of the concept is that it justifies human groupings by the shared relations of its members to an external world rather than through shared core internal traits. A very simple example of a serial collective would be all the people listening to a specific radio show: They may or may not share internal traits, but what combines them is that they share with the others a specific relation to a material external world that others (in this case all those who aren't listening to the show) don't. And in light of this shared relationship to a part of the external world, serial collectives will have shared experiences and perhaps interests too.

Young herself used this concept to try to clarify the nature of class and gender, albeit as much more complex and shifting serial collectives than the example I just gave. Similarly, I think we can use it to help clarify the nature of autism as a highly complex serial collective.

For instance, we can say that autistic people share a relationship with each other since we all live in a world that doesn't currently accommodate for our sensory processing. This acknowledges how the sensory processing of each autistic person is different from that of each other autistic person (which is true), but also that we all still share similar experiences such as constant sensory overload, sensory fatigue, and so forth (which is also true

This doesn't deny that we tend to share very rough clusters of similar internal traits; it just doesn't define reduce us or define us by this. Moreover, it has the benefit of predicting that the autism construct and how broad it is will continually change, since it would do so as the organisation of the external world changes. So this fits with the facts that were hard to cohere from a psychiatric perspective (see my article here for much more detail).

Currently, this is the only existing proposed metaphysics of autism that both coheres with the neurodiversity paradigm and is built on social model rather than medical-model thinking given its emphasis on the external. But I hope in the years to come, other neurodiversity proponents will build on this or suggest alternatives, for both autism and other neurominorities. My own proposal shouldn't, then, be seen as an attempt to give the final word, but more as an attempt to start a new conversation.


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firemonkey
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01 Feb 2020, 6:43 am

Does it really have to boil down to a simplistic medical vs social model position ? Yes -there are some things that society could do to improve the lives of those on the spectrum . However not all problems will disappear because society adopts a more enlightened stance .

There should be room for a mixed medical- social model .


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Mona Pereth
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14 Feb 2020, 2:25 pm

firemonkey wrote:
Does it really have to boil down to a simplistic medical vs social model position ? Yes -there are some things that society could do to improve the lives of those on the spectrum . However not all problems will disappear because society adopts a more enlightened stance .

There should be room for a mixed medical- social model .

Well, yes, and indeed there already is "room for a mixed medical- social model ."

Most advocates of the neurodiversity paradigm don't totally reject the medical model for every aspect of mental/neurological disability. Only the most extreme doctrinaire ones go that far. Alas, this extreme position has been all too commonly used as a straw man to attack the neurodiversity idea in general.


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Mona Pereth
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14 Feb 2020, 2:38 pm

ASPartOfMe wrote:

One of the sources referred to in that article is a paper titled Kinds of people: moving targets by Ian Hacking, about the ways that modern Western society constructs categories of people, including autistic people.


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firemonkey
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14 Feb 2020, 3:30 pm

I see it (ASD) as a disability , but one where, as with other disabilities, lives could be improved ,to some degree, by societal changes .


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ASPartOfMe
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14 Feb 2020, 7:48 pm

Mona Pereth wrote:
Well, yes, and indeed there already is "room for a mixed medical- social model ."

Most advocates of the neurodiversity paradigm don't totally reject the medical model for every aspect of mental/neurological disability. Only the most extreme doctrinaire ones go that far. Alas, this extreme position has been all too commonly used as a straw man to attack the neurodiversity idea in general.

^^^^
This

This and ND advocates are against all treatments tropes is way beyond tiresome for me.


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carlos55
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17 Feb 2020, 9:13 am

mona wrote:
Most advocates of the neurodiversity paradigm don't totally reject the medical model for every aspect of mental/neurological disability. Only the most extreme doctrinaire ones go that far. Alas, this extreme position has been all too commonly used as a straw man to attack the neurodiversity idea in general.


1.The problem is there is no central unified position on what autism advocacy and even neurodiversity is.

It’s mostly a loosely formed online group of likeminded people with a hive like view point of what is acceptable. Somehow from their point of view those not being part of that group because they don’t support them, or are too disabled to use a computer is seen as presumed agreement by all autistic people to their views.

The closest we have is ASAN who are very clear in large letters that autism should not be cured in principal regardless of disability level.

https://autisticadvocacy.org/about-asan ... tatements/

2. When government organisations or other NT dominated groups sign up to support "neurodiversity" they are simply supporting opportunities for mentally disabled people or like the idea of diversity NOT the full doctrine of "no cure" and "any brain wiring goes". The public including parents / carers / healthcare providers / big pharma/ education providers and many autistic people themselves would be quite outraged if such a position was ever officially taken which is why the full neurodiversity doctrine will never progress fortunately.

3. When neurodiversity supports the idea of "treatments, those "treatments" because they would be restricted are at best would make a small improvement in autistic people's lives but would do nothing for the man who is unable to live independently because of reduced executive functioning.

4 A bit like societal changes they advocate for, the idea of non open office or quite shopping hour at the supermarket can somehow makeup for not being able to make a cup of tea or function independently as a human being is laughable.



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17 Feb 2020, 6:11 pm

AS isn't a psychiatric condition, and it isn't a purely behavioural condition. It is a neurological condition becasue AS people function via a nuerological set of differences, which are not all the same for all AS people. (For example, aspies use more left brain abilities generally, while those once classified as autistic tend to use more right brained actitivity; this may explain the often very early and advanced language/reading skills in aspies (not all) and the delay in those in the "autistic group".

So if the starting point of diagnosis is to take a psychiatric view and diagnose using only behaviours, as if all people on the spectrum function in the same ways, as the DSM does, then validity is undermined and largely absent from the start.



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18 Feb 2020, 2:59 am

B19 wrote:
(For example, aspies use more left brain abilities generally, while those once classified as autistic tend to use more right brained actitivity; this may explain the often very early and advanced language/reading skills in aspies (not all) and the delay in those in the "autistic group"


My daughter was hyperlexic and could spell/read anything from about 3 and is highly musical and artistic well beyond NT standards so has lots of left brain activity but had a delay with communication and still struggles with speech.



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21 Feb 2020, 2:57 pm

carlos55 wrote:
1.The problem is there is no central unified position on what autism advocacy and even neurodiversity is.

There have been similar divisions in all civil rights movements. For example, back in the 1990's, the LGBT rights movement was divided on whether same-sex marriage was a desirable political/legal goal.

carlos55 wrote:
3. When neurodiversity supports the idea of "treatments, those "treatments" because they would be restricted are at best would make a small improvement in autistic people's lives but would do nothing for the man who is unable to live independently because of reduced executive functioning.

Executive functioning impairments are one of the things for which medical treatments should be sought, in my opinion.

A big problem with the whole idea of "curing autism" is that "autism" is defined primarily in terms of behaviors rather than in terms of any specific underlying neurological issue. It would be much better for medical treatments to focus on specific underlying neurological issues, especially the more severe ones.


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cyberdad
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21 Feb 2020, 5:38 pm

Mona Pereth wrote:
A big problem with the whole idea of "curing autism" is that "autism" is defined primarily in terms of behaviors rather than in terms of any specific underlying neurological issue.


Which is why there's not going to be a cure for a long time. It may be impossible to disentangle neurological wiring from the behaviours so a lot of research is at the gene level which I suspect is heading toward the ultimate objective of genetic testing.



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22 Feb 2020, 4:23 am

Mona Pereth wrote:
Executive functioning impairments are one of the things for which medical treatments should be sought, in my opinion.



I totally agree with that . As a person also with schizoaffective disorder the phrase 'cognitive remediation' is bandied about quite a lot . Both ASD and schizoaffective can impact negatively on EF .

There's been very little focus on any cognitive issues in the 46 years I've been a psych patient . At start of 1st admission in 1975 I was asked to do forward digit span and to count down from a 100 in groups of 7 . That's the total sum of anything cognitive.

Difficulties with organising and planning are in my notes only because I mentioned them c2005. There's been no help in that area .


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Your neurodiverse (Aspie) score: 133 of 200
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You are very likely neurodiverse (Aspie)