Media/pop culture Autism attitudes vs lived experience

Post Reply New Topic

The social model of autism pushed by advocates is largely nonsense. The idea that we can only function in a parallel universe where everything is perfect and we don't need to do the things NT`s do to survive like go out in the world to earn a living and support ourselves.

There is only one earth that wasn't built for humans, evolution built humans to function on it.

We make up only 1% of the pop, the other 99% are not going to change apart from a few minor concessions like quite hour at the store and educational tweaks here and there that will do very little for those severely effected. Most of what advocates want like an end to the open office are unpopular with NTs (the 99%)

or uneconomic to implement.

Advocates want to separate autism from all the other disorders associated with it, but this is not possible. Their is no "pure autism"

its a collection of overlapping disorders & multiple genetic faults as scientists recently confirmed in the beginning of this video.

https://www.simonsfoundation.org/event/ ... disorders/

Obviously grown adults should be free to choose their own bodies and path in life, but for those with more manageable milder symptoms to dictate to the medical community and others, that there should be "no cure" developed for any including severe autism like those in ND claim is just unethical and selfish.

There is only one reason ND are against a cure and its because they want to create an "identity" out of it

for what they in their misguided belief will bring them benefits (it wont), to the detriment of those who are unable to voice their opinion because they are to disabled by their autism.

The benefits and acceptance that ND believe would happen with an "identity" simply wont,

The label of "Autism" (vs Asperger's, vs PDD-NOS, vs what have you) has been subject to change and controversy, and there's a problem with lack of consistency in diagnostic practice and criteria that means that it's hard to know what someone means when they say "I have Autism". In 50 years we may even be using different labels. If so, what will happen to this burgeoning "Autism Activism"?

I mean, I think some level of "gatekeeping" of the label is necessary. We should get our ducks in a row by figuring out what we are discussing when we are discussing Autism.

No, we're pushing for more autistic-friendly workplaces -- which already do exist here in this universe; we just need a lot more of them.

Humans are capable of changing human society. I've witnessed drastic social changes within my lifetime -- including, for example, advances in disability rights. There was a time, not too many decades ago, when the idea of wheelchair accessibility wasn't on anyone's radar. An even more drastic social change, which faced much greater public resistance, was the advent of gay rights including same-sex marriage

Are you claiming that most NT's like the open office and wouldn't want to get rid of it? That's actually not true at all. See articles here and here and here and here and here.

The point is not that there is a "pure autism." The point is that it would be both simpler and safer to treat a few of a person's specific issues that cause the person the most suffering than it would be to try to "cure" the person totally by rearranging the person's entire brain. Furthermore, the specific issues that both (a) cause the most suffering and (b) are most likely to lend themselves to safe and effective medical treatment, are, in the vast majority of cases, NOT the "core symptoms of autism.

What I understand this video to be saying is that autism is an arbitrarily defined subset of what the speaker calls "neurodevelopmental disorders," in general, and what I would just call freaky brains. There is an infinite variety of different ways that a human brain could possibly be freaky, and the symptoms thereof often overlap. (I would add that most brain freakiness is disabling in various ways, but that the human brain's underlying structure is resilient enough, at least during early development, that such disabilities often -- though not always -- can be accompanied by outstanding abilities as well.)

So called "severe autism" is often autism accompanied by other, distinct though related neurological disabilities such as an inability to talk and an inability to control one's body. In most cases these other disabilities are far more "severe" than their autism per se. Hence these other disabilities are what should be focused on, primarily, in terms of the development of medical treatments

You have this backwards. The reason why autism becomes an "identity" for many of us is because we know that autism involves our entire brains, and because we therefore believe that attempts at a total "cure" are likely to do us more harm than good

They are even more disabled by their inability to speak, which is why it would make sense to focus more medical research attention on the latter than on "core symptoms of autism." Given all the billions of dollars that have been thrown at autism research, both by governments and by private foundations, there has been shockingly little research on why nonspeaking autistic people can't speak.

Bringing them about will require more than an "identity," it will require organization, as I have said many times.

But they are certainly possible. I have seen much greater accomplishments, against much greater odds, by various social movements within my lifetime. At least, for example, we don't have entire major religions condemning us as autistic people.

There is a new article on neurodiversity written by J.E Robison in psychology today that I read on facebook this morning,sorry I don't have a link but I'm sure the article is not hard to find if your looking for it.

Neurological diversity is a biological fact. Neurological function varies between individuals just like other human traits. The difference is that neurological diversity has gone unrecognized until recently, while physical diversity has always been plain to see.

Human diversity emerges as a result of genetics and environment. There is a large heritable component to some neurotypes, just as body shape tends to run in families. But it’s not all genetics. Environmental factors also influence human development. Diversity is also driven by evolution as many traits confer situational advantages, but it’s always a balance as “too much” or “too little” shades from difference into disability.

The continuum of neurological function includes people with many different cognitive traits. Memory, emotional sensitivity, ability to focus on a task, mathematical ability . . . all those things vary, as does general intelligence. Emotional intelligence has long been recognized and we are now seeing that it is on a continuum with logical intelligence at the other end. In other words, some people are governed by emotions while others, in the manner of Star Trek’s Spock, are logical.

During the twentieth century, psychiatrists gave diagnostic labels to cognitive traits that had been observed for a long time, but not pathologized with a diagnostic label. Happy or sad were long-recognized states of mind; psychiatrists recognized extremes of these behaviors with terms like manic or depressed, and they created formal labels like “major depressive disorder.”

Attention deficit hyperactivity disorder (ADHD) became the medical term for something parents called “bouncing off the walls.” Being withdrawn into oneself, having a limited range of interests, and having an impaired ability to connect with and engage others became autism, or autism spectrum disorder. The extreme logical thinker may exhibit traits of autism while the extremely emotional person can manifest traits of schizophrenia.

For several decades following their introduction, terms like ADHD or autism were only used to describe people with severe, profound impairments. Those labels were bestowed on children whose behavior was far different from that exemplified by most kids. Since differences existed on a continuum it was up to the trained professional to determine when simple difference became pathology.

Whatever one calls it, the range of neurological function, encompassing both typical and abnormal behavior, observed across a number of domains, describes human neurological diversity. That is neurodiversity, but neurodiversity is also more. Neurodiversity has become an identity: When individuals who had received psychiatric diagnoses wanted to identify themselves in non-medical terms, they felt they were “more than a diagnosis,” and believed medical labels pathologized them or carried stigma. Soon the word neurodiversity was adopted by others who lacked a formal diagnosis but still felt “different.” For them, the term was not assertion of a medical condition, or an attempt to claim disability supports, but rather a way to center themselves in the world.

In the neurodiversity worldview, people whose neurology is “average” are called neurotypical. People whose neurology differs from average; i.e., having traits of autism, dyslexia, or ADHD, are neurodivergent. Neurodiversity is the term for the continuum, and the population may be called neurodiverse. While that seems straightforward, it implies “one way or the other” that does not exist in real life. Psychologists agree there is no such thing as “typical”: We are all individuals.

Therefore, thought leaders now question the use of the terms neurodivergent and neurotypical. They argue that neurotypicality is an invalid concept since there are no people who have been tested and found to be “midrange” in all cognitive dimensions. Instead, each of us has a mix of strengths and weaknesses, and since we are not generally tested, our abilities are only guessed at. Therefore, neurotypical is merely a rough approximation even as the population is undeniably neurodiverse. No one word defines us; individuals are best described by their specific traits or even by support needs.

Neurodiversity is therefore a biological fact and also a term of identity. When someone identifies as having autistic traits in the context of neurodiversity, they are not generally seeking medical supports or disability accommodation, although they may also seek those things through formal diagnosis. Rather, they seek a sense of community by identifying with what they believe is a like-minded group.

Self-diagnosis of autism or ADHD is controversial but anyone is free to embrace the neurodiversity paradigm and say they are “different” because they are not assuming a formal medical label.

In terms of identity, most who identify with the neurodiversity paradigm see themselves as different, not disordered. They may also feel disabled, or disabled and exceptional. They generally perceive their neurological diversity as part of healthy human diversity. However, not all people feel this way about neurodiversity. Some feel so disabled, or suffer to such an extent, that they reject the neurodiversity paradigm for themselves. They describe themselves as sick, damaged, or injured.

That difference in views may be expressed thusly: At its extremes, difference becomes disability. While the point of transition varies from one person to another, there is always a point at which healthy difference becomes pathology or disorder.

think they are more disabled. In most cases disability is in the eye of the beholder: Studies have shown that most people judge themselves to be less disabled, even as observers. An exception would be in the world of work, where a person might not think of themselves as disabled, but might not be able to complete certain tasks on time or at all.

Neurodiversity as a biological fact applies to everyone. Neurodiversity as a term of identity applies to many people, but a significant number who feel disabled reject the neurodiversity paradigm. That is one limit of neurodiversity.

Schools and workplaces are fast developing neurodiversity programs, with a view to accommodating a wider range of people in schools and in jobs. That is a laudable goal, and an array of supports will no doubt allow people who have been excluded from work or school in recent years to participate. Neurodiversity programs with intensive supports and a social welfare model – like Project Search – will help a number of people too disabled for other programs.

Beyond that, there remains a portion of the population whose cognitive differences limit engagement in school and preclude transition to work. They may not be able to communicate effectively, or they may have significant cognitive impairments. They may have medical complications like epilepsy that compromise their quality of life. Critics of neurodiversity express the fear that broad adoption of the neurodiversity paradigm renders such people invisible.

In this writer’s view, that need not happen. Programs to support less disabled people should not come at the expense of programs for the more disabled. Disability support is not a zero-sum game. Neurodiversity – whether as neurological fact or social identity – should not be perceived as denial of profound cognitive disability in its many forms. Neurodiversity is a way for people to identify themselves, but some people are so disabled they cannot do that, and they cannot rightly be called anything but seriously disabled.

The Limits of Neurodiversity


Bolding, Italics, and underling=mine

Also as noted above stay away from twitter arguments, stick with wrong planet particularly this section.

That feeling is in my opinion an illusion caused by your brain

There is no evidence that future treatments would involve “rearranging the person`s entire brain” either which is a common unqualified red herring insinuation by ND when the idea of treatments come up.

The specific issues that cause the suffering are caused by the genetic / biological defects that is autism.

They cannot speak because of one of the core features of autism for genetic reasons, depending on severity can also cause delays. Also, there is a link between age of speaking and functioning (see link)

Basically, implies there is no pure benevolent autism and that some autism`s which they called ASD3 (severe autism) involve brain structural abnormalities. In other words, no separation of causes from Severe autism and HFA as ND advocates frequently state in their defence of autism when ID is mentioned. It’s a spectrum of severity Not autism + ID.

Autistic people would just go from human with a medical condition to genetic underclass to be ignored and segregated.

How exactly is that an "illusion"? Are you denying that autism involves our entire brains? (You yourself wrote here that autism is a "whole body disorder"; are you now saying it involves our whole bodies but not our whole brains?)

This is not a "red herring." It is the central essence of what a total "cure" would necessarily mean for a condition that involves the structure of the entire brain from its earliest development.

I'm not against treatments. I'm against the goal of a total (intrinsically radical) "cure." I'm in favor of the goal of maximum relief of suffering while staying within the limits of "First do no harm."

Autism and ID are distinct sets of issues, even if they often go together. (See the diagnostic criteria.) Both autism and ID have many different possible causes. Neither autism nor ID has a single central essence, nor a single central cause.

"Severe autism" can mean many different things, each of which deserves lots of research in its own right, in my opinion. "Autism" does not exist on a single linear scale; it is an umbrella term for many different conditions, some of which are severely disabling, others less so.

The most severely disabling conditions should get the highest priority in terms of treatment-oriented research, it seems to me. But, for the most part, that's not what's happening.

Also, autism researchers should listen more to those severely disabled autistic people who have managed to learn to communicate (e.g. by typing, if they are unable to talk). Autism researchers should also listen more to autistic people in general, as well. (See Why autism research needs more input from autistic people.)

There's always a danger of that happening, but the best way to prevent that from happening is for both us ourselves and our NT parents and relatives to be organized to protect our rights, in alliance with the larger disability rights movement