Marginalised Researchers In Neurology

Here's an opinion from someone other than myself and it's closely related to the thread. The author is Tom Clements. The fact you quoted me a text to support the view neurologically divergent people do have influence on this research opens a whole new and (for some) heated thread. "Heated" that is amongst those involved.
What do I mean?
I basically spent a few years involved with autism research forums. At first, it was exciting to think I was not alone and could communicate with others who had shared similar experiences. Gradually, reality hit home. The truth is that by far all those who claim to be "on the spectrum" are not, in my view, clinically autistic (or higher functioning autistic). I could go into detail but, suffice it to say, I'm no longer likely to simply assume those who give speeches in lecture halls truly themselves represent (neurologically and clinically) Schizophrenic, Schizoid, Aspergoid type. Without background knowledge, I cannot just rush and say, "Well, that's OK.
Here is Tom:

"Despite the noble intentions of many of its proponents, there are those who feel that neurodiversity excludes those for whom autism confers few if any real cognitive advantages. Despite its claim to be inclusive of all “neurotypes”, its ethos inevitably means that less verbally able autistic people are marginalised from the discussion. Rarely at a neurodiversity event, particularly one that aims to present autism as a competitive advantage in the marketplace, will you find an autistic person with an IQ of lower than 30 who is prone to lashing out and soiling themselves."

Tom Clements:

"The increasing emphasis on autism as neurodiversity has also created a huge rift in the community, particularly between autistic self-advocates and parents. Self-advocates, many of whom possess an above-average intellectual ability as well as great insight into their own condition, celebrate their autism as a core feature of their identity and often promote their neurological difference as a strength. Many who self-identify on social media using the #ActuallyAutistic hashtag insist that autistic people must be at the forefront of all autism discourse and that only autistic people themselves can be considered to be true experts in the condition.

(Not actually my position but a good point he makes. I have stated I carefully read all available research. As to being a "true expert" I would say more a case of experience and inner perspective. That doesn't invalidate other perspectives)

Such an attitude has led to the marginalisation of autistic people who, by virtue of their disability, are unable to speak and rely on others to do so on their behalf. It has also led to the legitimisation in self-advocacy circles of “self-diagnosis”, a practice that may in part account for the increased prevalence of autism and the watering down of the term itself. Many now self-identify as autistic as though autism were a fashion label rather than a debilitating disorder. "

Tom Clements:

"Severely autistic people have a life expectancy of 36 in the United States and 39.5 in Europe, while their parents and care-givers often experience PTSD and stress similar to that of combat veterans. Mildly autistic people, on the other hand, though far more prone to depression and suicide, can go on to lead productive and fulfilling lives, often blending imperceptibly into the wider population despite their idiosyncracies and social difficulties."

For me, this is very in between. I am definitely much better off physically and mentally than severely challenged people. However, I have never been able to blend in and work in any normal office or environment. I do very definitely get noticed and it's assumed by strangers I use drugs and so forth. In childhood it led to medical and, later, psychiatric treatment. So really I am not someone who can't relate to parents who face serious difficulties. Yet, if you are articulate and self-educated, it's easy to be mistaken as some kind of freeloader in an advocacy movement. Besides that, my real interest isn't in being an advocate. It's neurology.

Tom:

"Rarely at a neurodiversity event, particularly one that aims to present autism as a competitive advantage in the marketplace, will you find an autistic person with an IQ of lower than 30....... "

It totally annoys me too that these companies just assume someone such as myself is going to be a "computer geek". It's like "doing our bit" to be inclusive. The reality is I have met very clever autistic people who wouldn't get through the front door of such a company. One, for example, wore a kilt and talked to imaginary friends. Full blown Schizophrenia. Very intellectual but cut-off from reality.

davidbanner99@ wrote:... research is being carried out and published in a system that apparently marginalises those who suffer from autism related disorders...

davidbanner99@ wrote:The truth is that by far all those who claim to be "on the spectrum" are not, in my view, clinically autistic (or higher functioning autistic).

So actually, you have no way of even knowing if the system marginalizes research by those that suffer from autism.

Good to know.

Richard@DecisionSkills wrote:

davidbanner99@ wrote:... research is being carried out and published in a system that apparently marginalises those who suffer from autism related disorders...

davidbanner99@ wrote:The truth is that by far all those who claim to be "on the spectrum" are not, in my view, clinically autistic (or higher functioning autistic).

So actually, you have no way of even knowing if the system marginalizes research by those that suffer from autism.

Good to know.

"Rarely at a neurodiversity event, particularly one that aims to present autism as a competitive advantage in the marketplace, will you find an autistic person with an IQ of lower than 30....... "

Do you agree with Tom?

I would tend to add to Tom's observation one crucial point. IQ isn't the only factor. I have met several autists with higher IQ but limited communication ability. These latter will more than likely not find a place in a neurodiversity event.

Here's a crucial quote:

"Необходимо более точное отграничение шизоидной группы, во-1), от других форм психопатий, во-2), от шизоидного типа реакции, встречающегося как физиологический феномен в пределах нормальных вариаций (для последней группы желательно иметь термин взятый не из психиатрии)." Suhareva

"It is necessary to more accurately delimit the schizoid group, in-1), from other forms of psychopathies, V-2), from a schizoid type of reaction occurring as a physiological phenomenon within normal variations (for the last group it is desirable to have a term taken not from psychiatry)." Suhareva

Do you know what schizoid type reaction is? How does it apply to the American neurodiversity movement? Any opinion on that?

I came across so many accounts of misdiagnosis in the USA particularly. This is why I tend to be initially skeptical of "genuinely autistic researchers." Sure, they do exist. I once met one online. Despite that, a larger number don't seem to meet the diagnostic criteria outlined by Asperger in German. And few American psychologists appear to have read such sources. This is why I switched to Russian language clinical psychology. I found it much more accurate. More based on clinical data.

Here, one example:

"In 1995, when Ben Nugent was 17 years old, his mother told him she thought he had Asperger’s. This was particularly distressing to him, both because his mother was qualified to know—she was a psychologist specializing in the disorder—and because he was an aspiring novelist. As he puts it: “If what I had proposed to do with my life was to plumb the inner depths of other people, it could be a big problem.” He never actually believed he had Asperger’s, but at the time, it hadn’t yet become a pop-culture phenomenon, and when his mother asked him to appear in an educational video she was making about the disorder, he agreed. By the time he watched the film for the first time, he was 22, lived in New York, worked as an arts reporter at Time, and had a new set of friends, and it was clear to him that he was neurologically typical."

The second quote amusingly shows how easy it is for Peter Parker Syndrome to be interpreted as a neurological disorder.

"The Geek Syndrome,” popularizing the autistic-nerd meme. It was accompanied by Baron-­Cohen’s 50-question self-diagnostic questionnaire, and afterward, says Bryna Siegel, whose clinic is a short drive from Silicon Valley, “we had an incredible number of phone calls. I told my assistant, ‘If someone has their secretary call, don’t call back. If they have a secretary, they don’t have Asperger’s.’ ”

The bit about the secretary is spot-on.

davidbanner99@ wrote:"Rarely at a neurodiversity event, particularly one that aims to present autism as a competitive advantage in the marketplace, will you find an autistic person with an IQ of lower than 30....... "

Do you agree with Tom?

Sure. Why not? I have no reason to disagree with Tom.

That you won't find an autistic person with an IQ lower than 30 at a "neurodiversity event" doesn't demonstrate a system that marginalizes people that fit into that category.

It is like saying because a basketball hoop is 10' high that it systemically marginalizes short people. It doesn't. Short people are more than welcome to play basketball. That the game favors taller people is simply life.

That an autistic person with an IQ lower than 30 is rarely found at a neurodiversity event is like saying you will rarely find a person on a basketball court that is under 4' tall. They are both welcome to participate.

It's like saying swimming pools systemically marginalize those that can't swim.

By your very broad definition of marginalization every system in the world marginalizes someone.

"It is like saying because a basketball hoop is 10' high that it systemically marginalizes short people. It doesn't. Short people are more than welcome to play basketball. That the game favors taller people is simply life."

The difference is obvious. A Neurodiversity event has been designed to represent the interests of people affected by neurological deviation.

Basketball is a sub-group of sports as a whole. It is also a totally different example where psychology, social factors and thought processing mechanism play no role. It relies on physical ability. You might as well have picked Sumo Wrestling and compared that to the discussion.

Had you chosen a related example such as linguistics (psychological, sociological factors) there would be a valid point. However, a Russian language event without any native Russian speakers would be a pretty poor event. How could a group of Americans really learn Russian speaking to each other in a southern accent?

Do you agree with Tom when he stated autistic people are marginalised at such events?

This has been an interesting development. After a lot of opposition, Richard has finally agreed autistic people have indeed been marginalised. Although I never stated it was deliberate but just a reality. Here, at last:

Quote Tom

"Despite its claim to be inclusive of all “neurotypes”, its ethos inevitably means that less verbally able autistic people are marginalised from the discussion."

Quote Richard

"Sure. Why not? I have no reason to disagree with Tom."

This was left unanswered but I rebooted it because it's a really important quote.

"It is necessary to more accurately delimit the schizoid group, in-1), from other forms of psychopathies, V-2), from a schizoid type of reaction occurring as a physiological phenomenon within normal variations (for the last group it is desirable to have a term taken not from psychiatry)." Suhareva

Do you know what schizoid type reaction is? How does it apply to the American neurodiversity movement? Any opinion on that?"

Still, I guess at last we finally agreed.

davidbanner99@ wrote:This has been an interesting development. After a lot of opposition, Richard has finally agreed autistic people have indeed been marginalised.

Not for being autistic.

It's clear that when a person has an IQ of 30 that a neurodiversity event will not be "all inclusive". It is not being marginalized by intent. It is just an unfortunate reality of life.

According to an autistic person you have quoted...Paul Cooijmans... a person with an IQ of 30 is "severely retarded".

https://paulcooijmans.com/intelligence/iq_ranges.html

So I have no reason to disagree with Tom. Sure, people with less than 30 IQ find it difficult to participate at an event on neurodiversity. This has little to do with them being autistic.

Richard@DecisionSkills wrote:

davidbanner99@ wrote:This has been an interesting development. After a lot of opposition, Richard has finally agreed autistic people have indeed been marginalised.

Not for being autistic.

It's clear that when a person has an IQ of 30 that a neurodiversity event will not be "all inclusive". It is not being marginalized by intent. It is just an unfortunate reality of life.

According to an autistic person you have quoted...Paul Cooijmans... a person with an IQ of 30 is "severely retarded".

https://paulcooijmans.com/intelligence/iq_ranges.html

So I have no reason to disagree with Tom. Sure, people with less than 30 IQ find it difficult to participate at an event on neurodiversity. This has little to do with them being autistic.

O.K let's pinpoint the question. Let's forget I.Q. score specifics. The term is used often to refer just to high intellect. I don't think these people scored an actual test.

When Tom states more impaired autistic people are marginalised, do you agree? Yes or no?

Here's another view expressed by someone with Asperger Syndrome. This person states he experiences a struggle and is ignored.
Very many tell me the well-spoken, socially adept guest speakers at Neurodiversity conventions don't represent their status quo.
This is a common concern.
We all feel autistic researchers are marginalised. The reason: because they aren't socially integrated.

"It's only a few weeks ago that I read Hans Asperger's paper, and you realize that the media has taken a few soundbites and completely misrepresented what it is. Hans never said that people with Autism were academically inclined, which is simply what some people think. This is where the whole "nerd" stereotype comes from, and this is why I think it can be wrongly diagnosed.

The kids Hans described actually performed poorly in education and didn't adjust at all, which was my experience also. However, he mentioned they did excel in some things, and had good rote memory. I think it's the kids who aren't adjusting and making friends that need to be looked for, not the academically-inclined, high-achiever who is a bit on the introverted side. Most of the "geeky" kids I remember at school had fairly good social integration.

I understand that this representation is meant to be positive, but it does no service for those who struggle and ultimately get ignored.

I had language delay, and had speech therapy for quite a while. I still put Asperger's on health and safety forms/applications. "

davidbanner99@ wrote:When Tom states more impaired autistic people are marginalised, do you agree? Yes or no?

..."impaired autistic" people.

So a person can be:

-1- impaired (IQ less than 30/verbal issues).
-2- autistic
-3- autistic and impaired.

That a neurodiversity event is not inclusive of all ranges of IQ, from 0 - 180+ is not because the person is autistic. That the event is not inclusive of all verbal abilities is not because of autism. The events don't intentionally or systemically marginalize the autistic. The event welcomes all people that are autistic.

Those that host neurodiversity events could be more inclusive if they made special accommodations for the impaired, regardless if they have autism. You are conflating the two as if "impaired autistic" is the same as "autistic".

I think it is generally a good idea to try to be more inclusive, and to provide reasonable accommodations for those with disabilities.