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magz
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07 Sep 2019, 4:19 am

"The Cure" approach:
Let's make the autistic children normal!

Neurodiversity approach:
You don't need to be "normal" (whatever it means) to deserve recognition as a valid human being!

They are not obviously mutually exclusive, at least to some extent.
Certainly, you can search for treatments and cures to help the most struggling autistic people, while recognizing them as perfectly valid humans.
Or so I hope.


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quite an extreme
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07 Sep 2019, 4:30 am

magz wrote:
"The Cure" approach:
Let's make the autistic children normal!

Neurodiversity approach:
You don't need to be "normal" (whatever it means) to deserve recognition as a valid human being!

I think both approaches are wrong. Most autistics can't become normal, except the autism is nothing but the result of an anxiety disorder. But autists can nearly always learn more about 'normal' people and how to deal with them in better ways.


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07 Sep 2019, 6:31 am

To me neurodiversity is just another form of disability rights movement. One that encourages and accommodate certain ways of life.
It doesn't exclude 'cure'/'treatment' nor 'pride'/'acceptance', but it does concern human rights and accountability.

And one excludes another? :lol:
Or at least in terms of autism -- neurodiversity seems so different outside autism.

Allistic Neurodiversity.
I would like someone to research or write about this, maybe 'we' can learn something...

YET;
Because autism is that complicated, unlike other allistic ND cases it seems.
Because comorbids. Because what some household or culture wants. Because individuals and what they want. Because imbalance of power and hierarchy. Because contrasting representations. Because circumstances and conditioning. Because human. Because whatever.




And nope. Anxiety doesn't result autism, as much as the former mimics and worsens the latter so much.
It's just really common circumstance, that it's one of the main reasons why I couldn't relate well to most autistics' circumstances and experiences related to that. :|
Heck, anxious allistics would likely relate more to most autistics in this forum than I do, despite that there are things that only autistics could understand and relate to anxiety or not.


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07 Sep 2019, 8:12 am

"Neurodiversity" is largely the cult of identity or about identity politics, as opposed to disability rights.

Its disproportionatly composed of those who are "anti cure", (which inevitably means anti new treatments) at least at senior level.

Wanting to dictate autism research and being "anti cure" im afraid dont go well together.

Ive seen some of these people on tv and for them saying autism and disability in the same sentence is like watching a small child swear for the first time. Yes very uncomfortable looking.

If one looks at other pathologies you can find plenty of organisations that generally represent everyone with their respected condition.

The sad fact is many see ND for what it is and are turning away and forming their own groups or counter groups, sometimes that is referred to as autism wars.

If they just dropped the identity politics, stayed out of science and cure or not cure arguments, there could be so much more acheived for everyone.


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07 Sep 2019, 10:54 am

What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.


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07 Sep 2019, 12:12 pm

Sweetleaf wrote:
What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.


Its not really about curing autism or making them neurotypical its about encouraging & supporting medical treatments to make many peoples lives better.

Rarely does anything get cured completely, but most conditions have treatments, autism has none, over many decades hopefully science will be able to shave the worst aspects of autism that cause so much misery, while keeping the good bits.

In the distant future I suspect even neurotypicals will seek some positive triats from autism so things wont just be in one direction. There are some positive traits with autism.


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07 Sep 2019, 2:06 pm

Sweetleaf wrote:
What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.


If it was the only way for me to able to get a girlfriend without suffering from paralyzing anxiety, I would take it.



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08 Sep 2019, 1:06 am

quite an extreme wrote:
magz wrote:
"The Cure" approach:
Let's make the autistic children normal!

Neurodiversity approach:
You don't need to be "normal" (whatever it means) to deserve recognition as a valid human being!

I think both approaches are wrong. Most autistics can't become normal, except the autism is nothing but the result of an anxiety disorder.

Autism can be greatly aggravated by, but isn't the result of, an anxiety disorder. Autism has deeper neurological roots.

quite an extreme wrote:
But autists can nearly always learn more about 'normal' people and how to deal with them in better ways.

Up to a point, we can. But there are limits.

For example, I can't do normal eye contact. This isn't due to shyness; it's due to a combined sensory integration and attention focus issue. I can't do eye contact while at the same time focusing on the verbal content of what someone is saying. Fake eye contact (looking at forehead instead of eyes) doesn't solve the problem. When I'm listening to someone, my eyes tend to completely disengage from all visual stimuli.

Also, there are apparently many autistic people who are extreme introverts who simply cannot socialize to anywhere near the extent that is required in many jobs these days, and who need a quiet, uncrowded environment. See “Hello friend, now please go away”.

Hence we need Autistic-friendly workplaces where these and other such differences can be accepted and accommodated.

We also need early childhood therapy for autistic children to focus more on their cognitive development, and, to that end, to work with rather than against their autistic traits to develop whatever strengths the kids might have, and then use those strengths to deal with their weaknesses. Instead the current focus of the most popular therapy (ABA) is on trying to normalize the kids' behavior, e.g. trying to get them to make eye contact just like an NT. (See the separate thread The ABA monopoly in America leaves parents poor choices.)


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Last edited by Mona Pereth on 08 Sep 2019, 2:04 am, edited 1 time in total.

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08 Sep 2019, 1:29 am

carlos55 wrote:
Sweetleaf wrote:
What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.


Its not really about curing autism or making them neurotypical its about encouraging & supporting medical treatments to make many peoples lives better.

Rarely does anything get cured completely, but most conditions have treatments, autism has none, over many decades hopefully science will be able to shave the worst aspects of autism that cause so much misery, while keeping the good bits.

If that were the aim, autistic rights activists wouldn't have an issue with it. However, the current holy grail is a much more radical "cure."

This holy grail, besides being unfeasible in the near future, skews research priorities in a way that does not maximize relief of human suffering in the meantime. For example, very little attention is being paid by researchers to the most severe problems of the most severely disabled autistic people, such as their inability to communicate in any language-based way.

As I've detailed elsewhere, the holy grail of a total "cure" for autism is also downright creepy in its implications. Given both how complex and how varied autism is, a complete "cure" for all forms of autism would require very radical yet also very precise brain-tinkering. If this were to be achieved, it would be but a small step from that to the ability to program all humans to be totally compliant slaves.


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08 Sep 2019, 4:18 am

carlos55 wrote:
"Neurodiversity" is largely the cult of identity or about identity politics, as opposed to disability rights.

Its disproportionatly composed of those who are "anti cure", (which inevitably means anti new treatments) at least at senior level.

Wanting to dictate autism research and being "anti cure" im afraid dont go well together.

Ive seen some of these people on tv and for them saying autism and disability in the same sentence is like watching a small child swear for the first time. Yes very uncomfortable looking.

If one looks at other pathologies you can find plenty of organisations that generally represent everyone with their respected condition.

The sad fact is many see ND for what it is and are turning away and forming their own groups or counter groups, sometimes that is referred to as autism wars.

If they just dropped the identity politics, stayed out of science and cure or not cure arguments, there could be so much more acheived for everyone.

ND movement supporters while generally anti cure are not anti treatment. ND movement supporters are widely PERCEIVED as anti treatment. “Identity Politics” as currently defined is a pejorative describing people who view themselves and others solely through the prism of group identity. The term is used to discredit people’s opinions as invalid. When there is Columbus Day or St. Patrick’s day parade and politicians go there and mug for the TV cameras as is common practice, we don’t call that identity politics. When a person is a member of the Knights of Columbus and calls himself “Italian” we don’t browbeat him for not calling himself “American” or even “Italian-American”. People just seem to assume the person is not more loyal to Italy then America and thinks of himself as more than just Italian. If someone identifies as “autistic” or “aspie” and is a supporter of the Neurodiversity movement so many assume that person is an and elitist ableist engaging in toxic identity politics. Why is this?


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08 Sep 2019, 4:51 am

I think it's understandable that those at the more cognitively/functionally able end of the spectrum will be at the driving seat when it comes to advocating as to how things should be done.

The question then is are they advocating for those similar to themselves ,or for the broad spectrum of people with ASD?

I'd like to think the latter is the case for the sizeable majority at the forefront of the neurodiversity movement .



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08 Sep 2019, 10:54 am

ASPartOfMe wrote:
ND movement supporters while generally anti cure are not anti treatment. ND movement supporters are widely PERCEIVED as anti treatment.

Right. And the solution isn't to shut up (as carlos apparently thinks we should) but to advocate more loudly for the kinds of treatments (and research) we believe are needed.

ASPartOfMe wrote:
“Identity Politics” as currently defined is a pejorative describing people who view themselves and others solely through the prism of group identity. The term is used to discredit people’s opinions as invalid. When there is Columbus Day or St. Patrick’s day parade and politicians go there and mug for the TV cameras as is common practice, we don’t call that identity politics. When a person is a member of the Knights of Columbus and calls himself “Italian” we don’t browbeat him for not calling himself “American” or even “Italian-American”. People just seem to assume the person is not more loyal to Italy then America and thinks of himself as more than just Italian.

Right, because the Italians and Irish aren't discriminated against all that much anymore.

Only the groups that are still disadvantaged get browbeaten (by conservatives, at least) for "identity politics" -- precisely because they are the very ones who actually need to organize on the basis of group identity, and because others either (1) would rather keep the disadvantaged group in their place or (2) consider their own difficulties with the process of social change to be an oh-so-much-more serious problem than the far greater difficulties faced by the disadvantaged group.

(Additionally, alas, some members of the disadvantaged group echo the discomforts of the privileged as a reason to refuse to support the fight for their own rights.)

ASPartOfMe wrote:
If someone identifies as “autistic” or “aspie” and is a supporter of the Neurodiversity movement so many assume that person is an and elitist ableist engaging in toxic identity politics. Why is this?

For a historical perspective by Jim Sinclair, in his history of Autism Network International:

Quote:
Nearly all of us who were involved in the earliest period of ANI had met many parents of autistic children, at conferences and local parent support groups. Almost invariably, the parents were pleased and excited to hear from us. True, their primary interest was in using us as resources for their children rather than supporting us in our own goals; but still, they were not hostile toward us. It seems that one autistic person at a time--and preferably a passive one--might be welcomed as an interesting novelty or an amusing diversion or possibly even a valuable source of information and insight. But autistic people organizing together, autistic people pursuing our own interests rather than furthering the interests of parents and professionals--suddenly we were perceived as a threat.

Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo--to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination--has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look "normal" and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

Quote:
When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don't have anything in common with other people with disabilities. It's like they are putting me in a whole different category and saying that I don't have any right to speak. It upsets me because I take it that they don't want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven't had the opportunities to experience different situations in life. (Kennedy, 1996)

3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity. Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves. He also expressed frustration with white abolitionists' demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: "Give us the facts, we will take care of the philosophy." Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.


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Last edited by Mona Pereth on 08 Sep 2019, 11:18 am, edited 5 times in total.

Sweetleaf
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08 Sep 2019, 10:58 am

Marknis wrote:
Sweetleaf wrote:
What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.


If it was the only way for me to able to get a girlfriend without suffering from paralyzing anxiety, I would take it.


I'd think a cure for social anxiety would be more helpful for that.


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08 Sep 2019, 11:43 am

Sweetleaf wrote:
Marknis wrote:
Sweetleaf wrote:
What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.


If it was the only way for me to able to get a girlfriend without suffering from paralyzing anxiety, I would take it.


I'd think a cure for social anxiety would be more helpful for that.


My anxiety seems to make people think I am a drug addict. I missed seeing 3Teeth in Austin because I couldn’t find a parking spot in reasonable distance from the club they were booked at and the boyfriend of the couple I asked for help scowled at me as well as shielded his girlfriend when she tried to ask what I needed help with. I was nervous when I asked for help because I was getting desperate after getting stalked by a homeless person and hitting my car trying to pay for a spot in a parking garage (That wouldn’t take my car for some reason) beforehand. The incident also reinforced my fear that women are always going to choose the “bad boys” and that I will truly die single and unhappy.



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08 Sep 2019, 12:14 pm

Mona Pereth wrote:
ASPartOfMe wrote:
ND movement supporters while generally anti cure are not anti treatment. ND movement supporters are widely PERCEIVED as anti treatment.

Right. And the solution isn't to shut up (as carlos apparently thinks we should) but to advocate more loudly for the kinds of treatments (and research) we believe are needed.

ASPartOfMe wrote:
“Identity Politics” as currently defined is a pejorative describing people who view themselves and others solely through the prism of group identity. The term is used to discredit people’s opinions as invalid. When there is Columbus Day or St. Patrick’s day parade and politicians go there and mug for the TV cameras as is common practice, we don’t call that identity politics. When a person is a member of the Knights of Columbus and calls himself “Italian” we don’t browbeat him for not calling himself “American” or even “Italian-American”. People just seem to assume the person is not more loyal to Italy then America and thinks of himself as more than just Italian.

Right, because the Italians and Irish aren't discriminated against all that much anymore.

Only the groups that are still disadvantaged get browbeaten (by conservatives, at least) for "identity politics" -- precisely because they are the very ones who actually need to organize on the basis of group identity, and because others either (1) would rather keep the disadvantaged group in their place or (2) consider their own difficulties with the process of social change to be an oh-so-much-more serious problem than the far greater difficulties faced by the disadvantaged group.

(Additionally, alas, some members of the disadvantaged group echo the discomforts of the privileged as a reason to refuse to support the fight for their own rights.)

ASPartOfMe wrote:
If someone identifies as “autistic” or “aspie” and is a supporter of the Neurodiversity movement so many assume that person is an and elitist ableist engaging in toxic identity politics. Why is this?

For a historical perspective by Jim Sinclair, in his history of Autism Network International:

Quote:
Nearly all of us who were involved in the earliest period of ANI had met many parents of autistic children, at conferences and local parent support groups. Almost invariably, the parents were pleased and excited to hear from us. True, their primary interest was in using us as resources for their children rather than supporting us in our own goals; but still, they were not hostile toward us. It seems that one autistic person at a time--and preferably a passive one--might be welcomed as an interesting novelty or an amusing diversion or possibly even a valuable source of information and insight. But autistic people organizing together, autistic people pursuing our own interests rather than furthering the interests of parents and professionals--suddenly we were perceived as a threat.

Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo--to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination--has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look "normal" and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

Quote:
When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don't have anything in common with other people with disabilities. It's like they are putting me in a whole different category and saying that I don't have any right to speak. It upsets me because I take it that they don't want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven't had the opportunities to experience different situations in life. (Kennedy, 1996)

3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity. Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves. He also expressed frustration with white abolitionists' demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: "Give us the facts, we will take care of the philosophy." Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.

Jim Sinclair was writing about events 25 or even 30 years ago and writing about beliefs of allistic parents. Five years ago I would have defined the autism wars that way, autism “warrior moms” and Autism Speaks against autistic ND supporters. It seems to have reversed itself to a large degree. Autism Speaks does not use the word cure much anymore and while many autism parents still have that hostility based on stereotypes towards ND autistics just as many if not most others seem to have ND movement beliefs(even if sometimes they stereotype autistics too positively). It is among autistics that the belief that the ND movement is all about toxic to autistics anti treatment beliefs based on autistic supremacy has taken significant hold.

As mentioned outsider backlash and gaslighting while distressing is to be expected. What I find truly disturbing is how much of this is coming from us.

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.


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magz
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08 Sep 2019, 12:26 pm

Sweetleaf wrote:
Marknis wrote:
Sweetleaf wrote:
What would a cure even look like, if they did come up with one...neurosurgery to re-wire everything? Just doesn't seem very feasible to cure someones neurology to make them neurotypical.
If it was the only way for me to able to get a girlfriend without suffering from paralyzing anxiety, I would take it.
I'd think a cure for social anxiety would be more helpful for that.

The existing treatments for social anxiety I know of:
a) anti-anxiety drugs
Pros: work instantly, no effort required
Cons: work short-term, have serious side effects, addictive.
b) thorough psychotherapy
Pros: can solve the problem long term, healthy
Cons: slow, require a good therapist, a lot of hard work and enormous courage to face the demons you fear the most.


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