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Proposal to bring back “Combating Autism” legislation

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ASPartOfMe
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22 Apr 2023, 9:46 am

Combatting autism, again - The Hill
Craig Snyder is former chief of staff to Sen. Arlen Specter and was the principal lobbyist involved in the enactment of the Children’s Health Act of 2000 and the Combatting Autism Act of 2006. He currently represents the Autism Science Foundation.

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What if 1 of every 218 American children [the CDC calculation is 1/(4.59/1000)] faced lifetimes of pain and panic, unable to communicate their distress, having a much shorter life expectancy than their unafflicted peers, their families usually broke and often broken as they seek medical care and services that are terribly inadequate.

Surely, this would be a public health crisis. Science would be mobilized. Anything less would be seen as a matter of human rights abused and equity denied.

But what if the response to all this was instead thorough denial, based on an ideological filter through which these facts pass and emerge as a story in which these children are not sick at all and not needing to be made well?

This is the situation today for the Americans suffering “Profound Autism,” approximately 27 percent of all the Autism Spectrum Disorders (ASD) diagnoses according to the landmark new CDC report just released, the first to examine the prevalence of profound autism (and to use that term).

When I became a lobbyist myself, my first client was Cure Autism Now (CAN), co-founded by Hollywood producer Jonathan Shestack.

“If you’ve met one person with autism, then you’ve met one person with autism,” Shestack would say, illustrating the heterogeneity of the phenomenon, and “if you haven’t met someone with autism, you surely soon will,” he prophetically warned.

We used CAN’s influencer friends in entertainment, and the army of parents they convened, to petition for the redress of this grievance. For a time, it seemed to be working.

In 2006, Congress and the president enacted the Combatting Autism Act, intended to expand and intensify national efforts, persuaded by the argument that autism and  Alzheimer’s were emerging lifecycle bookends, crushing the quality of life of too many American families and the projections of the economic costs of autism.

But a funny thing happened on the way to combatting autism, something that left Alzheimer’s’ advocates racing ahead but the profound autism community floundering — the rise of self-advocates, people with ASD diagnoses but not the symptoms and impacts of profound autism, and their ideology of neurodiversity.

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

Let me be clear: The neurodiversity movement has done much good. It has turned much of the historically “normal” bullying and invidious discrimination against people with different forms of social expression into respect for atypical ways of being.

Those of us advocating for the extraordinary needs of those facing profound autism wish to take absolutely nothing away from anyone else, but we cannot comprehend our government and culture failing to respond to the suffering wrought by profound autism.

Over the next year there is a new opportunity for America to get this right.

The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

The idea that the ND movement is opposed to treatments and services for all on the spectrum is rather bizarre because that is a central theme of movement.

Mr. Snyder says he does not want to take away anything the autistics he is not lobbying for. I am not a mind reader, I have no idea if he is sincere. But I do know he understands the impact of language, that is central to the opinion piece. The language of war he uses “Combatting Autism”, “mobilized”, “Army of parents” has, does, and will cause problems for autistic people. No amount of attempting to separate autism from the person can change this.


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carlos55
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22 Apr 2023, 2:38 pm

ASPartOfMe wrote:
Combatting autism, again - The Hill
Craig Snyder is former chief of staff to Sen. Arlen Specter and was the principal lobbyist involved in the enactment of the Children’s Health Act of 2000 and the Combatting Autism Act of 2006. He currently represents the Autism Science Foundation.
Quote:
What if 1 of every 218 American children [the CDC calculation is 1/(4.59/1000)] faced lifetimes of pain and panic, unable to communicate their distress, having a much shorter life expectancy than their unafflicted peers, their families usually broke and often broken as they seek medical care and services that are terribly inadequate.

Surely, this would be a public health crisis. Science would be mobilized. Anything less would be seen as a matter of human rights abused and equity denied.

But what if the response to all this was instead thorough denial, based on an ideological filter through which these facts pass and emerge as a story in which these children are not sick at all and not needing to be made well?

This is the situation today for the Americans suffering “Profound Autism,” approximately 27 percent of all the Autism Spectrum Disorders (ASD) diagnoses according to the landmark new CDC report just released, the first to examine the prevalence of profound autism (and to use that term).

When I became a lobbyist myself, my first client was Cure Autism Now (CAN), co-founded by Hollywood producer Jonathan Shestack.

“If you’ve met one person with autism, then you’ve met one person with autism,” Shestack would say, illustrating the heterogeneity of the phenomenon, and “if you haven’t met someone with autism, you surely soon will,” he prophetically warned.

We used CAN’s influencer friends in entertainment, and the army of parents they convened, to petition for the redress of this grievance. For a time, it seemed to be working.

In 2006, Congress and the president enacted the Combatting Autism Act, intended to expand and intensify national efforts, persuaded by the argument that autism and  Alzheimer’s were emerging lifecycle bookends, crushing the quality of life of too many American families and the projections of the economic costs of autism.

But a funny thing happened on the way to combatting autism, something that left Alzheimer’s’ advocates racing ahead but the profound autism community floundering — the rise of self-advocates, people with ASD diagnoses but not the symptoms and impacts of profound autism, and their ideology of neurodiversity.

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

Let me be clear: The neurodiversity movement has done much good. It has turned much of the historically “normal” bullying and invidious discrimination against people with different forms of social expression into respect for atypical ways of being.

Those of us advocating for the extraordinary needs of those facing profound autism wish to take absolutely nothing away from anyone else, but we cannot comprehend our government and culture failing to respond to the suffering wrought by profound autism.

Over the next year there is a new opportunity for America to get this right.

The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

The idea that the ND movement is opposed to treatments and services for all on the spectrum is rather bizarre because that is a central theme of movement.

Mr. Snyder says he does not want to take away anything the autistics he is not lobbying for. I am not a mind reader, I have no idea if he is sincere. But I do know he understands the impact of language, that is central to the opinion piece. The language of war he uses “Combatting Autism”, “mobilized”, “Army of parents” has, does, and will cause problems for autistic people. No amount of attempting to separate autism from the person can change this.


Good article all the key points I've been making for a long time

Quote:
The idea that the ND movement is opposed to treatments and services for all on the spectrum is rather bizarre because that is a central theme of movement.


Not sure how you can say that unless you mean research into GI or epilepsy etc..for people with profound autism , with a shortened life span of misery that`s not very meaningful.

These symptoms are likely interwoven with autism anyway so its unlikely just researching the Co-morbids on their own would be very effective.

ND advocates are against a cure for autism, its central to their belief. Autism research & ND movement are not compatible like the Taliban and LGBT are not compatible.

There can be no middle ground because autism research is about reducing autism & its symptoms, ND movement is about not touching autism.

Its as simple as that.

As I've said before, people can choose their own path of not wanting curing, its only a problem when they try & block others seeking a different path, unfortunately that is what's happening right now with spectrum 10k a prime example.


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22 Apr 2023, 8:37 pm

carlos55 wrote:
ND advocates are against a cure for autism, its central to their belief.

I can understand why you feel this way. However, the truth is the understanding of autism by ND advocates and many professionals in the field is that autism is a neurologic difference that is not going to be "cured" like a disease. There is legitimate concern that the only "cure" that will be found will be eugenic abortion. And that will end up going far beyond those who would have "profound autism". Will it reach future Elon Musks and Einsteins, I can't say it won't.


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22 Apr 2023, 10:05 pm

CarlM wrote:
There is legitimate concern that the only "cure" that will be found will be eugenic abortion.

Yup. I honestly can't see any curing of already existing individuals happening. The "best" result I can see is learning what causes autism and using that knowledge to prevent autistic people from coming into existence at all.
Which I am not in favor of.

I'm not entirely sure what I think of the idea that autism is a natural variance of human neurology. Cuz I see my autism as a disability that very much impacts my life, makes it a lot harder. But I also wouldn't want to be "cured" if presented with the opportunity. :|


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23 Apr 2023, 5:46 am

CarlM wrote:
carlos55 wrote:
ND advocates are against a cure for autism, its central to their belief.

I can understand why you feel this way. However, the truth is the understanding of autism by ND advocates and many professionals in the field is that autism is a neurologic difference that is not going to be "cured" like a disease. There is legitimate concern that the only "cure" that will be found will be eugenic abortion. And that will end up going far beyond those who would have "profound autism". Will it reach future Elon Musks and Einsteins, I can't say it won't.


I suspect prevention will largely be gene therapy on adults to remove carrier status for all mutations that effect sperm and egg.

All carrier mutations not just autism

This will probably be in a few decades and will likely be routine in teenagers like vaccines in schools are now.

Beyond that there’s Denovo mutations which are more complicated but it’s inevitable they will understand more on that.

In already here autistic people I suspect there’s gene therapy to undo the harmful mutations that causes disability in the future.

If that cures the whole autism is debatable but Obviously gene therapy for autism is likely to be in the future.

Some people are happy the way they are and no one should be forced to change.

The point I was making is no small sub section of a group has the right to block or prevent others being treated if they do wish.


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23 Apr 2023, 7:39 am

Very interesting expert discussion on the genetics of autism.

I think most people will find interesting regardless of where they stand

https://m.youtube.com/watch?v=PnghdPcHT ... lzbQ%3D%3D


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23 Apr 2023, 8:02 am

Depends. Sperg autism probably shouldn't be cured but other forms of autism seems to have low quality of life and should be cured. Sperg has pros and cons but some other forms of autisms just to be more cons than pros.

And tangentially, this is another reason to suggest why there should be different labels for autism and not just all the same boat of autism.



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23 Apr 2023, 12:28 pm

Lecia_Wynter wrote:
Depends. Sperg autism probably shouldn't be cured but other forms of autism seems to have low quality of life and should be cured. Sperg has pros and cons but some other forms of autisms just to be more cons than pros.

And tangentially, this is another reason to suggest why there should be different labels for autism and not just all the same boat of autism.

Right now a lot of experts agree with you that there are multiple “Autisms”. If that turns out to be the case through gene editing and other technologies I think cures will be found for certain ‘Autisms”.

Because of the wide variation of presentations the “Autisms” theory seems to make sense but that does not mean it is true. While one can never say never, if the “Autisms” theory is wrong finding a cure is going to be very difficult.


To say certain autistics should be cured and others not gets into a lot of dicey areas. For competent adults it is a freedom of choice issue. Adults will make choices to cure themselves during bad times in their lives and come to regret it. That was their choice and they are going to have to live with it.

Who gets to decide and how is it decided that an adult is competent to make that decision?

For kids there is no freedom of choice issue, the parents or legal guardians are going to make that life impacting decision for them. There are plenty of documented cases and member here that presented as severely autistic as kids that grew up to be “spergs”. You cure that kid and you possibly altered a contented if not happy life. Maybe you stopped people whose autistic mind would have helped them invent things.


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23 Apr 2023, 2:09 pm

ASPartOfMe wrote:
Lecia_Wynter wrote:
Depends. Sperg autism probably shouldn't be cured but other forms of autism seems to have low quality of life and should be cured. Sperg has pros and cons but some other forms of autisms just to be more cons than pros.

And tangentially, this is another reason to suggest why there should be different labels for autism and not just all the same boat of autism.

Right now a lot of experts agree with you that there are multiple “Autisms”. If that turns out to be the case through gene editing and other technologies I think cures will be found for certain ‘Autisms”.

Because of the wide variation of presentations the “Autisms” theory seems to make sense but that does not mean it is true. While one can never say never, if the “Autisms” theory is wrong finding a cure is going to be very difficult.


To say certain autistics should be cured and others not gets into a lot of dicey areas. For competent adults it is a freedom of choice issue. Adults will make choices to cure themselves during bad times in their lives and come to regret it. That was their choice and they are going to have to live with it.

Who gets to decide and how is it decided that an adult is competent to make that decision?

For kids there is no freedom of choice issue, the parents or legal guardians are going to make that life impacting decision for them. There are plenty of documented cases and member here that presented as severely autistic as kids that grew up to be “spergs”. You cure that kid and you possibly altered a contented if not happy life. Maybe you stopped people whose autistic mind would have helped them invent things.


There`s generally a link between severity of disabling symptoms and age noticed and degree of body autonomy

A 15 year old aspie who`s diagnosed may be quite intelligent and choose to wait or reject any future treatment that improved the social aspects of the condition.

They would have a larger amount of body autonomy

A very young child that showing ID and severe neurological impairment would show up very soon and hopefully one day get treated. These people have reduced body autonomy for as long as they are like this, but then again they are totally dependent on others anyway so will always have reduced autonomy and little say in their lives.

There`s probably some autism gene mutations that are beneficial & worth keeping or considered just a difference.

But we have to remember autism is diagnosed on impairments alone, a common misconception, being good at maths or having a special interest doesn't make someone autistic.

Having specific problems that can be severe enough to be a disability does

Autism is about taking away most of the time not giving


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23 Apr 2023, 4:35 pm

Tsky.
Warning: My 5AM PMSing:

Here's the bigger picture of things; it's not just autism.
Adults would choose regardless.

But children won't. The unborn won't.
It's the adult parents who would conceive it's human existence if they have a choice in the matter.

'Ridding of autism' would be the least of the problems.
The problems are still about the trends and whatever people are convinced is 'good'. Whatever biased data is put in the AI's slot of memories.


I'll be for it -- the whole gene editing -- IF and IF society is woken up to toxic human dynamic patterns in both micro and macro levels.

And overall people are barely awake. Not even half there. Not ready.
Maybe the future would.

See the rising trends of voluntary childlessness? While it's a high economic standards of living...

Even NTs would think existing is painful and inconvenient. It's not just being an autistic in this NT oriented world.

'Losing autism' would be the least of all problem.
The flip side of having the tech, though, is the possibility of regaining autism -- and other disabilities -- and figuring how to raise said children and make a sustainably ideal system and tech for them.

But that would happen if and if society knows how to wake up.

Instead they're looking at standards they're convinced to follow because 'everyone is doing it'.

I don't think people would just be satisfied with just removing genetic diseases, they likely want something extra.

Like how most people had yet to question 'why' having children is a 'milestone'?
That most people born today, are wanted just for the sake of meeting standards and expectations.

They want a social status of being parents, not the individual that would be born into this world that will grow up into individuals themselves.

Now individuals, had been and can be enticed with the idea of ending their so called bloodlines than fearing it.


Back to the matter at hand; "combating autism".

:lol: People here hadn't able to admit -- it's all about the intellectually disabled and the egotistical, the conformist yet socially stunted, the intolerant of experiences of existence, the bullied non-confomist, and the competitive types who aren't able to compete.

How much of this is the autism -- the good and the cute ones -- and how much is the autism that makes it a disability or worse? Whether naturally or artificially?

Why not be very specific? Why 'all of them'?
Why 'all autistics' and not a specific autism?
Why all autistic traits and not just the disabling or undesirable ones?

"Get rid of all of them". "Accomodating all of them". "Perpetuate all of them". "Condemn all of them". "Save all of them".

"Autism shouldn't exists because all autistics suffer"
"Autism shouldn't exists because I can't get a GF, being a social embarrassment and have anxiety my whole life"
"Autism shouldn't exist because my loved one can't conform, share stupid stories with me, cannot know their place and died young by banging their heads"
"Autism shouldn't exist because my kid cannot satisfy my narcissistic standards and is basically an animal in a human body"

"Autism should exists because geniuses"
"Autism should exists because I have talents because of it"
"Autism should exists because f- society and everyone in it"
"Autism should exists because I'm not an intellectually disabled social embarrassment"

Who can distinguish which is which before birth?
Who can distinguish whose future before birth? When there's no winner between nature against nurture?


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24 Apr 2023, 6:23 am

Many of these arguments by ND advocates against autism research falls under what’s known as “The Straw Man Fallacy” (see attached video)

“I’m against autism cure because this will happen”

Or

“I’m against vaccines because you’ll be forced to take them”

All these claims can be answered with maybe they will maybe they won’t but that’s not a valid reason because it’s an unproven claim and separate debate.

These advocates therefore don’t really have a valid societal claim to restrict things for others

If such a debate reached a court room like the Supreme Court for example any straw man claim like this would be thrown out as invalid.


https://m.youtube.com/watch?v=qMzY_-ZZJ ... bGxhY3k%3D


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24 Apr 2023, 7:09 am

all this reminds me of the movie Gattaca. The point of which, if I remember correctly, is that society shouldn't prematurely judge individuals based on perceived inferiority, and that eugenics can cause long-lasting problems for individuals in this same society.

"The movie Gattaca is often referenced in public debates about the societal dangers of human gene editing. In the public imaginary, its message is clear: the dystopian future it portrays stands as a warning against the societal acceptance of genetic perfectionism and genetic discrimination."

when applied to 'curing' autism, it seems nightmarish, doesn't it?


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24 Apr 2023, 10:35 am

Readydaer wrote:
all this reminds me of the movie Gattaca. The point of which, if I remember correctly, is that society shouldn't prematurely judge individuals based on perceived inferiority, and that eugenics can cause long-lasting problems for individuals in this same society.

"The movie Gattaca is often referenced in public debates about the societal dangers of human gene editing. In the public imaginary, its message is clear: the dystopian future it portrays stands as a warning against the societal acceptance of genetic perfectionism and genetic discrimination."

when applied to 'curing' autism, it seems nightmarish, doesn't it?


eugenics like patriotism has a bad name because of history

You have good and bad eugenics just like good and bad patriotism

In the US kids salute the flag in the classroom or people support their country in the Olympics

Then you have racial supremacy invading other countries etc..

For Eugenics you have fixing medical problems and disability via gene editing

Because this was not possible in the old days eugenics meant sterilization or worse things

Most fears of eugenics are based on enhancing the human like superhuman strength for a dictatorships army or superhuman intelligence that would give a country unfair advantage

Again enhancing what is considered ordinary and fixing an impairment are two different things


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24 Apr 2023, 11:52 am

carlos55 wrote:

eugenics like patriotism has a bad name because of history

You have good and bad eugenics just like good and bad patriotism

In the US kids salute the flag in the classroom or people support their country in the Olympics

Then you have racial supremacy invading other countries etc..

For Eugenics you have fixing medical problems and disability via gene editing

Because this was not possible in the old days eugenics meant sterilization or worse things

Most fears of eugenics are based on enhancing the human like superhuman strength for a dictatorships army or superhuman intelligence that would give a country unfair advantage

Again enhancing what is considered ordinary and fixing an impairment are two different things



I do not fear enhancement eugenics- in fact, I eagerly await the day humanity becomes biologically immortal. The problem is that people *do not know the difference between fixing an impairment and fixing what society deems undesirable*
If a hypothetical Gay Gene is discovered, should it be nipped from designer babies because that means no grandchildren? Is gay in this context not an impairment? People don't know the difference between impairment and personally undesirable


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24 Apr 2023, 12:23 pm

carlos55 wrote:
Many of these arguments by ND advocates against autism research falls under what’s known as “The Straw Man Fallacy” (see attached video)

“I’m against autism cure because this will happen”

Or

“I’m against vaccines because you’ll be forced to take them”

All these claims can be answered with maybe they will maybe they won’t but that’s not a valid reason because it’s an unproven claim and separate debate.

These advocates therefore don’t really have a valid societal claim to restrict things for others

If such a debate reached a court room like the Supreme Court for example any straw man claim like this would be thrown out as invalid.


https://m.youtube.com/watch?v=qMzY_-ZZJ ... bGxhY3k%3D

This is not a court of law but a public policy decision. In general public policy decisions take into account a perceived future. The pro cure argument is no different. If we cure autism it is going save misery and money. Without the impairments of autism the cured peoples real personalities will come out, their skills will be given an opportunity to be fully realized.


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24 Apr 2023, 12:34 pm

carlos55 wrote:
Readydaer wrote:
all this reminds me of the movie Gattaca. The point of which, if I remember correctly, is that society shouldn't prematurely judge individuals based on perceived inferiority, and that eugenics can cause long-lasting problems for individuals in this same society.

"The movie Gattaca is often referenced in public debates about the societal dangers of human gene editing. In the public imaginary, its message is clear: the dystopian future it portrays stands as a warning against the societal acceptance of genetic perfectionism and genetic discrimination."

when applied to 'curing' autism, it seems nightmarish, doesn't it?


eugenics like patriotism has a bad name because of history

You have good and bad eugenics just like good and bad patriotism

In the US kids salute the flag in the classroom or people support their country in the Olympics

Then you have racial supremacy invading other countries etc..

For Eugenics you have fixing medical problems and disability via gene editing

Because this was not possible in the old days eugenics meant sterilization or worse things

Most fears of eugenics are based on enhancing the human like superhuman strength for a dictatorships army or superhuman intelligence that would give a country unfair advantage

Again enhancing what is considered ordinary and fixing an impairment are two different things

Eugenics is always going to be problematic because our judgment is oftentimes questionable. We don't collectively know what's good for us or have a sufficient sense of what traits should and shouldn't be allowed to exist.

I'm very much curious how they propose to figure out which cases would and wouldn't benefit from this treatment or what the cost to society at large is from removing autism from the population as we do continue in many areas, we're not all high support needs and those that are can still contribute something of value.