How I understand neurodiversity...
When did you first notice a significant number of autistics (or, at least, people identifying themselves as autistics) saying such things?
I've done lots of online reading about the autism community since January 2018. I don't recall noticing the above phenomenon at all until spring 2019 or so.
Earlier I asked why this is. While I don’t have an answer I have a theory. I do think what we are seeing is reflective of the increased popularism/anti elitism that has been happening worldwide over the last five years.
My theory is that the neurodiversity movement has just not been able to fulfill its promise, mainly due to a lack of community organizing. The lifeblood of all successful civil rights movements has been community organizing. Without it, I suspect that many autistic people just see no way forward to improve their sh***y lives, and hence see no hope other than the theoretical possibility of a "cure."
Community organizing is tough for us, but we gotta do it, hopefully with some help from sympathetic allistics.
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,979
Location: Long Island, New York
When did you first notice a significant number of autistics (or, at least, people identifying themselves as autistics) saying such things?
I've done lots of online reading about the autism community since January 2018. I don't recall noticing the above phenomenon at all until spring 2019 or so.
This type of things ebb and flows. When I joined in 2013 WP and elsewhere was pretty uniformly pro ND or neutral. 2014 was the year after the DSM 5 came out and before the allegations against Hans Asperger. There were three or four simultaneous anti "Asperger" threads going on with an overall theme that it is hurting "real autistics" combined with a number of Autism is a curse threads. There would be threads about widespread over diagnosis, threads about the supposed widespread phenomenon of people faking Aspergers to be trendy or "self diagnosed" people convincing themselves they are aspie. There were demands that people stop calling themselves "Aspie" to a much much larger degree than occurred after the Hans Asperger revelations. "Self diagnosis" has always been controversial and when Jerry Seinfeld speculated he might be autistic in November WP was nearly torn apart by simultaneous pro and anti self diagnosis threads. As part of that hostile climate advocates were branded as "self diagnosed" or falsely diagnosed people or "shiny aspies" incorrectly speaking for "real autistics" like themselves whose lives were being cursed by Autism.
While the invective never got to that level again it was after the release of "Neurotribes" in September 2015 that criticism more focused specifically on the ND movement emerged.
The idea the advocates are against all treatments because autism is just a difference or a gift has always been part of this.
After the claims against Hans Asperger emerged in the spring of 2018 outside WP I read a bunch aha we knew the self identified aspies are ableist towards other autistics because the whole diagnosis was based on Nazi philosophy and more demands that people stop calling themselves Aspie ala WP in 2014.
Community organizing is tough for us, but we gotta do it, hopefully with some help from sympathetic allistics.
Of course correlation does necessarily equal causation but I just used my (Autistic?) pattern recognizing skills to notice how similar the claims that a bunch of elitists who can never get us are speaking for us and screwing us over rhetoric is between the political word and the anti ND movement are.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Objections to "Aspie supremacists" are not necessarily the same thing as objections to the neurodiversity paradigm. I've seen blog posts by people who were themselves neurodiversity advocates objecting to what they called "Aspie supremacy" or "shiny Aspies."
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
Neuro-Diversity is analogous to Racial Diversity -- and as a movement, it is nothing more than acknowledgement and acceptance of people with different neural type.
Adhering to the opposite ideology would make someone a "Neuro-Nazi", or someone who believes that only one neural type is acceptable and that all others should either be cured or segregated.
_________________
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,979
Location: Long Island, New York
It is not the same thing at all yet it and I have seen them also but is a common anti-ND movement trope. You have been pointing out the founders and some current ND movement supporters do not fit the definition of "high functioning". I have been pointing out ND activism designed to help more severely affected. Others have done the same. It is like spitting into the wind, the belief by many anti ND autistics that pro ND people are anti treatment or see autistic as a superpower or wanting the Aspie label to separate themselves from "autistics" or some or all of the above is unshakable.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,979
Location: Long Island, New York
Are the Voices of the "Severely" Autistic Being Silenced? - Psychology Today
Robert Chapman, Ph.D. is a neurodivergent academic and research fellow in the philosophy department at the University of Bristol, UK. He specialises in the philosophy of medicine, neurodiversity theory, and disability theory. From August 2019 he will be leading the two-year research project Health and Wellbeing for a Neurodiversity Age, and exploring themes relating to the project through this blog. All opinions expressed here are his own.
To begin, we need to clarify whose voices we have in mind. Most people classified as "severe" are non-verbal, and many (though certainly not all) have further cognitive or learning disabilities. Many struggle to communicate their needs, and it is often hard for others to tell how deep their comprehension of the world is. Given these factors, it is much harder to identify a representative voice or voices than it is with other minority communities.
However, there are also many people diagnosed as “severe” who can communicate—for instance, by typing. If there is anything we can reasonably conceive of as the "voice" or “voices” of the "severely" autistic, it will likely come primarily from these individuals. Of course, they cannot speak for all autistics, but it could surely be argued that they should be taken to have much greater credibility on the subject of “severe” autism than anyone else.
If it were true that neurodiversity proponents did overlook so-called "severe" autism, we would expect all those who can communicate to say that their form of autism really is an inherently tragic disorder—and thus that the neurodiversity perspective is misguided and harmful when applied to the "severe" end of the spectrum.
But this isn't the case. In fact, many of those who sit at the "severe" end of the spectrum tend to say things that are very much in line with the neurodiversity perspective. Consider Naoki Higashida, who wrote the following in his book The Reason I Jump:
“What would we do if there was some way that we could be ‘normal’? Well, I bet the people around us—our parents and teachers—would be ecstatic with joy and say, ‘Hallelujah! We’ll change them back to normal right now!’ And for ages and ages I badly wanted to be normal, too. Living with special needs is so depressing and so relentless; I used to think it’d be the best thing if I could just live my life like a normal person. But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am.
Why have I come round to thinking this way? To give the short version, I’ve learnt that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal—so we can’t know for sure what your 'normal' is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”
Here we see views in line with the neurodiversity position. Being against the idea that autism should be seen as inherently at odds with happiness, or as something that we should necessarily seek to cure, are some of the core neurodiversity paradigm beliefs. This is further corroborated by Tito Rajarshi Mukhopadhyay, who, in his book How Can I Talk If My Lips Don't Move? Inside My Autistic Mind, likewise laments the "sickening web of [the] belief system" that frames autism as "a disease that needs a cure."
Of course, not everyone at this end of the spectrum holds such views, and I am certainly not claiming that these quotes are sufficient to vindicate the neurodiversity perspective as such. But it is clear that many classified as "severe" do come much closer to the neurodiversity perspective than to the traditional view of autism as an inherently tragic medical pathology.
Nonetheless, whenever someone with the "severe" diagnosis publishes their writings, a large part of the typical public response is to seek ways to discredit the author. In the case of Naoki Higashida's book I quoted above, David Michell, who helped publicize his book, has noted:
“While The Reason I Jump enjoyed a positive reception, an accusation was leveled that nobody with 'genuine' severe autism could possibly have authored such articulate prose: never mind the YouTube clips showing Naoki authoring this same articulate prose. Therefore, Naoki must have been misdiagnosed and doesn’t have autism at all; or he’s an impostor at the Asperger’s Syndrome end of the spectrum, akin to the character Sheldon Cooper in "The Big Bang Theory"; or his books are written by someone else, possibly his mother. Or me. The New York Times reviewer cautioned the translators against 'turning what we find into what we want.' (The subtext I can’t help but see here is, 'These desperate parents won’t face the fact their son is a vegetable so their objectivity is compromised.') Elsewhere, Naoki has been accused of seeking entry into the guru business. You really cannot win.”
On the one hand, it is understandable that people are wary of potential abuse (as has sometimes happened with the widely discredited method of Facilitated Communication). However, such criticisms, when directed consistently at all autistic people who can communicate independently, go beyond harmless skepticism. What emerges here is a kind of epistemic catch-22, whereby the prejudiced belief that no "severely" autistic people can think or communicate is used to dismiss all those who clearly can do so.
So who is really silencing the voices of the "severely" autistic? Interestingly, I do not see many neurodiversity proponents routinely claiming that such voices are not real. Rather, it tends to be critics of the movement who, perhaps without realizing it, seem to uphold and reinforce a systematic silencing of those classified as "severe"
Ultimately, it is not hard to see how the underlying deficit framing itself contributes to this trend: by reducing autism to tragic and inherently harmful functional impairments that severely disable thought and speech, the very idea that someone classified as "severe" has anything to say is rendered unthinkable—even when the evidence is there for all to see.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Not really the same thing comparing a harmless celebration or party with a political movement making demands that others may not agree with.
A political movement composed of those usually at the top end of a spectrum for a pathology that it doesnt want a cure for in principal.
A political movement that makes demands on the types of treatment others should have, that may not be in their best interest.
What about those who want a cure in principal? What about those who dont have a voice because they are too compromised by their autism?
Do carers and parents get a voice on the "no cure" policy afterall they have the terrible task of choosing a care home for their child and have to deal with biting and other stressful behaviour?
What about the government that have to pay the welfare and special schools do they get a say?
If you want to really create an autism rights movement then those who are most severly effected or their carers / parents should have the greatest say.
Until then it will just be another elitist self serving group that many will avoid.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,979
Location: Long Island, New York
Not really the same thing comparing a harmless celebration or party with a political movement making demands that others may not agree with.
A political movement composed of those usually at the top end of a spectrum for a pathology that it doesnt want a cure for in principal.
A political movement that makes demands on the types of treatment others should have, that may not be in their best interest.
What about those who want a cure in principal? What about those who dont have a voice because they are too compromised by their autism?
Do carers and parents get a voice on the "no cure" policy afterall they have the terrible task of choosing a care home for their child and have to deal with biting and other stressful behaviour?
What about the government that have to pay the welfare and special schools do they get a say?
If you want to really create an autism rights movement then those who are most severly effected or their carers / parents should have the greatest say.
Until then it will just be another elitist self serving group that many will avoid.
I don’t know how things are in the UK where but in New York politicians have always marched for the cameras at these parades. The paraders talk about “Italian Pride”, or ‘Jewish Pride” the organizers encourage these politicians to attend in hope of receiving benefits from them. Politicians have always spoken to Jewish groups, Italian groups and tailored their message to appeal to these groups. It was just called “politics”. Politicians have tailored their messages to groups of people since time immemorial. Plenty of people do not like Christopher Columbus. Israel is a very controversial yet when they politicians pander for Jewish votes at the “Salute to Israel Parade” they and the marchers are not accused of engaging in identity politics. It is the elite of those groups that organize these events also.
If you are pro cure you have a right to speak for yourself, vote for pro cure politicians, and if there are none start a pro cure political party and lobby for a cure. Until recently most autism advocacy groups were pro cure. If you are non verbal technology can allow you to lobby by starting an online petition, signing one, or starting a anti ND blog as is being done.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
If you are pro cure you have a right to speak for yourself, vote for pro cure politicians, and if there are none start a pro cure political party and lobby for a cure. Until recently most autism advocacy groups were pro cure. If you are non verbal technology can allow you to lobby by starting an online petition, signing one, or starting a anti ND blog as is being done.
Not really the same since all these groups can take care of themselves as human beings, its mostly self serving politics to win votes from that particular group, they`ll give military hardware & political support to a certain country to win the large vote from that particular religion for example. They`ll also pretend to have roots from some great grand parent to win the large vote from that cultural group.
The problem is for now ND own the discourse because they are at the top of their spectrum, so they have formed an elitist group for themselves and are talking for those that can`t have an opinion because they are too compromised. Funny because one of the threads on here was about "Neurotypical privilege", well I don't know about NT privilege but there`s plenty of privilege in the ND community by the looks of it.
You claim to want to represent ALL those with autism by starting a movement then tell potentially the majority who may not be as high functioning or at least agree to or your views to get lost & start another movement, don't think your going to get very far on that with just a minority echo chamber.
ND is based on the false science of "neurodiversity", i.e autism is a difference as opposed to a disability. Autism is a international recognised pathology by the World Health Organisation and practically every mainstream national medical sector, in every nation on earth. Its also backed up by common sense, look at an adult with severe autism and its rather obvious that that individual has a mental disorder. So its founded on false science like any cult, whether it be UFO, end of the world or flatearthers.
False science is always bad and ends bad for multiple reasons.
In fact the founders were simply motivated by an initial desire not to feel disabled, which is slightly understandable in one sense, but many here would ironically view as abilist today. There is difference in feeling in spirit and reality (ask any champion wheelchair racer stuck on a subway)
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,979
Location: Long Island, New York
If you are pro cure you have a right to speak for yourself, vote for pro cure politicians, and if there are none start a pro cure political party and lobby for a cure. Until recently most autism advocacy groups were pro cure. If you are non verbal technology can allow you to lobby by starting an online petition, signing one, or starting a anti ND blog as is being done.
Not really the same since all these groups can take care of themselves as human beings, its mostly self serving politics to win votes from that particular group, they`ll give military hardware & political support to a certain country to win the large vote from that particular religion for example. They`ll also pretend to have roots from some great grand parent to win the large vote from that cultural group.
The problem is for now ND own the discourse because they are at the top of their spectrum, so they have formed an elitist group for themselves and are talking for those that can`t have an opinion because they are too compromised. Funny because one of the threads on here was about "Neurotypical privilege", well I don't know about NT privilege but there`s plenty of privilege in the ND community by the looks of it.
You claim to want to represent ALL those with autism by starting a movement then tell potentially the majority who may not be as high functioning or at least agree to or your views to get lost & start another movement, don't think your going to get very far on that with just a minority echo chamber.
ND is based on the false science of "neurodiversity", i.e autism is a difference as opposed to a disability. Autism is a international recognised pathology by the World Health Organisation and practically every mainstream national medical sector, in every nation on earth. Its also backed up by common sense, look at an adult with severe autism and its rather obvious that that individual has a mental disorder. So its founded on false science like any cult, whether it be UFO, end of the world or flatearthers.
False science is always bad and ends bad for multiple reasons.
In fact the founders were simply motivated by an initial desire not to feel disabled, which is slightly understandable in one sense, but many here would ironically view as abilist today. There is difference in feeling in spirit and reality (ask any champion wheelchair racer stuck on a subway)
What about those ND activists who are or were severe in childhood?
Why are NT's more qualified to opine and define about severe autistics than autistics even if these autistics are far less severe?
As far as "getting lost" while pro and anti cure autistics can agree and work together on some issues I can not see how those having such a fundamental disagreement on the very definition of can be in the same organization. There are blogs, the autistic dark web started by anti ND autistics. By the way pro cure activists are speaking for those who can not speak for themselves also.
As far as scientific agreement goes the scientific agreement has much better odds of being correct then amateur opinion, but not always. Science agreed that the earth is flat, refrigerator mothers causes autism etc. When these orthodoxies were challenged by outliers they were mocked for going against all proof and common sense. That is how it works.
As for me personally I view autism as a combination of difference and impairments.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
That makes sense to me .
That's in agreement with Simon Baron Cohen's views
viewtopic.php?f=33&t=375801
_________________
Let's not confuse being normal with being mentally healthy.
<not moderating PPR stuff concerning East Europe>
NT's are not more qualified to define Autism, which is why i said earlier the greatest influence on any direction on the autistic rights movement should be from those most severely effected by Autism.
IMHO The word "difference" is just a semantic term used to justify an anti cure agenda.
Autism is a disability in nearly all cases a net negative. Having a few positive traits do not compensate for what gets taken away in many cases i.e the ability to form relationships both friendships & romantic, work and live independently on the earth as an independent adult that does not have to rely on a carer whether gov or family.
Of course being Autistic is a difference, everything is a difference including being dead, but its how the word gets used that may not be in everybodys best interest.
We are all equal under the law anyway.
Difference turns into identity which turns into many other things many bad for autistic people in the long run.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
Did you actually read Baron Cohen's article?
https://blogs.scientificamerican.com/ob ... community/
He's not any kind of activist, he's a researcher working on autism.
I don't know where your views on ND movement come from. Maybe you just need someone to blame for nonexistence of a cure-all-your-problems pill?
_________________
Let's not confuse being normal with being mentally healthy.
<not moderating PPR stuff concerning East Europe>
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,979
Location: Long Island, New York
NT's are not more qualified to define Autism, which is why i said earlier the greatest influence on any direction on the autistic rights movement should be from those most severely effected by Autism.
IMHO The word "difference" is just a semantic term used to justify an anti cure agenda.
Autism is a disability in nearly all cases a net negative. Having a few positive traits do not compensate for what gets taken away in many cases i.e the ability to form relationships both friendships & romantic, work and live independently on the earth as an independent adult that does not have to rely on a carer whether gov or family.
Of course being Autistic is a difference, everything is a difference including being dead, but its how the word gets used that may not be in everybodys best interest.
We are all equal under the law anyway.
Difference turns into identity which turns into many other things many bad for autistic people in the long run.
In America being black is a net negative, you have a lower chance of a getting a good job, a better chance of being a criminal and being a victim of a crime. This was true for the Irish and Italians when they started their parades. If you were homosexual in America in the 1950s most likely your life was hell in multiple ways, science labeled your sexuality a disorder that is a cause of misery and depression and pedophilia. A lot of LBGT people desperately wanted a cure. It damm well hurt your chances at having relationships while a lot of it was outsider discrimination caused some social problems are caused by being homosexual, the dating pool is less, and you can not have offspring the typical way.
Identity is identity, it is not inherently evil. It depends on how a person uses it. If you attend a few parades and festivals a year and stick few pictures of successful people of your group up on the wall of your residence it is not bad. If you use it to be a supremacist, to judge and stereotype people including yourself based on their group it is a bad thing.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Similar Topics | |
---|---|
Neurodiversity event moved to meet demand |
03 Sep 2024, 11:31 am |
I'm dating a non autistic and they don't understand me |
14 Sep 2024, 9:15 am |
How to understand my non-autistic partner? |
08 Nov 2024, 12:30 pm |
Too much "i am sorry" "I understand"... |
21 Oct 2024, 8:46 pm |