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Autism Speaks No Longer Seeking Cure

Posted: Fri Oct 14, 2016 4:11 pm
by Winnie
Autism Speaks No Longer Seeking Cure

by Michelle Diament | October 14, 2016

[...]

Autism Speaks’ board of directors voted in late September to modify the organization’s mission statement, marking the first such change since the nonprofit was established in 2005.

Previously, Autism Speaks spoke of unifying the autism community to address what it called an “urgent global health crisis.”

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder,” the old statement indicated.

The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

[...]

Full article: https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/

Re: Autism Speaks No Longer Seeking Cure

Posted: Sat Oct 15, 2016 2:59 am
by Santosg
This is truly sickening. Autism Speaks has been steadily becoming a bankrupt institution for a while. The founders family has disavowed it, stating that it betrayed its original mission.

It shifted, as happens with lots of these organizations, from a grass roots movement of concerned parents to an established part of the established medical paradigm, reinforcing the standard approach in lock step with the officially sanctioned narrative.

This is something that I anticipated happening. The entire medical community is moving away from even trying to treat autism. To even discuss treating autism makes you a target of the medical review boards. There is little funding available. Try being a researcher and propose investigating ways to cure autism and see your chances of making tenure be destroyed or get yourself fired outright.

It goes something like this. Here's the devolving logic that is being presented as a whole.

1) Autism is genetic
2)Autism has no environmental factors,
3) Autism can't be treated
4) Autism is not even a 'disability'

The 4th one is the best one and the one gaining the most traction at the level of our 'culture politics.' Today, you have certain individuals who act as spokespeople for autism and police what can be said about it. There are strict parameters on how autism can be discussed. Its not formal, but its the same way that certain behaviors that were once considered unpalatable or negative can no longer be criticized. Autism is a 'gift', autism is awesome, autism is the next step in 'human evolution.' Most of these pathetic creatures prattling on about this don't even have autism, just a label they can use to put themselves in the limelight. But it goes in quick step with the other elements of our society: like normalizing obesity. I have nothing against obese people, but it certainly is a product of bad dietary and lifestyle choices and not something to be glorified.

Worst part is, all you parents just let them do it. You don't cause hell, get the fat cats at Autism Speaks booted from their cushy positions. Nah, you just sit back and allow this garbage to condemn our children to a diminished life.

And hell, a few of you welcome this 'chance' with open arms.

Re: Autism Speaks No Longer Seeking Cure

Posted: Sun Oct 16, 2016 11:56 am
by Winnie
Santosg wrote:This is truly sickening. Autism Speaks has been steadily becoming a bankrupt institution for a while. The founders family has disavowed it, stating that it betrayed its original mission.

It shifted, as happens with lots of these organizations, from a grass roots movement of concerned parents to an established part of the established medical paradigm, reinforcing the standard approach in lock step with the officially sanctioned narrative.

I doubt this will change funded research as much as the attention-grabbing headline indicates. I don't see how "advancing research into causes and better interventions for autism spectrum disorder and related conditions" is qualitatively different from the original mission.

I think the wording of the mission changed to reflect more people on the spectrum and attention to those needs that are present now among families and individuals living with autism. Parents have criticized AS for years for using their local fund-raising walks to fund the org, while the org did not seem to affect much change for families in their communities.

Katie Wright disavowed AS and has been aligned with Generation Rescue and other orgs promoting quackery from the beginning. In 2005, GR claimed to know the cause and cure of autism -- autism was misdiagnosis of mercury poisoning, and chelation was the cure. Rashid Buttar was the quack du jour who they promoted and credited with the cure. Even congressmen boarded the kooky quack train.

And besides, if we believe these quacktastic claims, then there is already a cure for autism. Just ask Andrew Cutler, right?

Santosg wrote:This is something that I anticipated happening. The entire medical community is moving away from even trying to treat autism. To even discuss treating autism makes you a target of the medical review boards. There is little funding available. Try being a researcher and propose investigating ways to cure autism and see your chances of making tenure be destroyed or get yourself fired outright.

Could you please provide some examples? This sounds like the same rhetoric coming from Gen Rescue, Age of Autism, Vaxxed, etc, when trying to convince and mislead their extremist readership.

Re: Autism Speaks No Longer Seeking Cure

Posted: Sun Oct 16, 2016 6:37 pm
by Santosg
You have an ideological opposition to attempt to cure autism. At one level, I understand that you don't believe that autism has a cure and therefore attempts to cure it are fraudulent. But the movement in the 'there is not cure for autism' has moved in a different direction. It claims, boldly, that autism itself is just a 'different type of brain,' no better and no worse. These individuals dismiss talk about finding cures for autism in the same way some members of the deaf community feel it is wrong to give deaf children cochlear implants, since there is nothing wrong with being 'deaf.'

If we were to simply accept this approach, we now ascribe a moral value to the celebration and preservation of 'autism,' or 'deafness.'

For instance, in the comment section of this topic on Left Brain Right Brain, that I'm sure is among your favorite medical blogs, you can read the comments of Judith. The completely illogical and idiotic way that Judith examines this problem is so stunning it needs to be quoted at length.

"This makes more sense help and acceptance is what is needed right now. These comorbids must be dealt with. Autism Speaks can be a great cause without insulting people on the spectrum.
Distinguishing between ASDs and other diagnoses can be challenging because the traits of ASDs often overlap with symptoms of other disorders and the characteristics of ASDs make traditional diagnostic procedures difficult.[5][6] Contents from wiki 1 Comorbid conditions 1.1 Anxiety 1.2
Attention-deficit hyperactivity disorder 1.3 Bipolar disorder 1.4 Bowel disease 1.5 Developmental coordination disorder 1.6 Epilepsy 1.7 Fragile X syndrome 1.8 Gender dysphoria 1.9 Intellectual disability 1.10 Neuroinflammation and immune disorders 1.11 Nonverbal learning disorder
1.12 Obsessive-compulsive disorder 1.13 Tourette syndrome 1.14 Sensory problems 1.15 Tuberous sclerosis 1.16 Sleep disorders 1.17 Other mental disorders"

https://leftbrainrightbrain.co.uk/2016/ ... -now-gone/

Here is the basic and fundamental problem: autism is itself simply a cluster of comorbids! Yet brilliant Judith somehow can separate autism into a separate category from all the other comorbids she lists. These can and should be treated directly, it seems, but not autism. Judith better watch what she says, since she even dares to treat gender dysphoria as a 'disorder'. That's no longer a question for science, its a socially sanctioned and celebrated way of life.

When we come to treat autism as natural and simply a normally occurring difference within human populations, we're going to stop funding research that could actually address it fundamentally. You know that Winnie, but you are fine with it, since it fits your ideological outlook. Just come out and say that. Don't act naïve.

At some level, all interventions that try to 'treat autism' are trying to cure it. ABA and speech are trying to address and improve language deficits, ideally until they are neurotypical. In that way, one can make a legitimate claim that ABA is trying to 'cure' autism. And that's the point, that's what made Lovaas so effective. They were not trying to coddle, to handhold, or to hold parades. They were trying to give young children a chance to live a full life. Lovaas was incredibly effective, but his methods are no longer 'legitimate.'

Autism Speaks started out as an organization that was trying to cure autism and it should have remained an organization that tries to cure autism. The problem with Generation Rescue, for instance, is they are too focused on identifying the cause of autism--in terms of mercury poisoning--and little about fundamental scientific steps to reverse the disorder.


Autism is a manifestation of specific delays in language, socialization, repetitive behaviors. That's it. If we were able to treat these effectively, a person no longer is autistic. To actually treat these symptoms is actually very hard. The point is, though, that autism does not exist as some existential category. It exists as a series of deficiencies that have a negative effect on the ability of an individual to interact in their community. There are autistic people who are so self involved and neurotic that they understand themselves solely by virtue of their diagnosis. A person might have autism, but they are not defined by that diagnosis. And there is an individual trapped and limited in their true self realization by virtue of autism. We need to help these people and not pander to the neurotics.

Re: Autism Speaks No Longer Seeking Cure

Posted: Tue Oct 18, 2016 1:40 pm
by Winnie
Santosg wrote:You have an ideological opposition to attempt to cure autism. At one level, I understand that you don't believe that autism has a cure and therefore attempts to cure it are fraudulent.

My ideological position -- since there is no cure for autism, anyone claiming to cure autism is a fraud. Potentially risky, invasive, and/or painful experimentation on children with disabilities is not some noble endeavor by persecuted mavericks in their quest to "find a cure."

I’ve seen this several places, like here , and it probably represents my position on the issue of “cure:”

Our understanding of autism has grown tremendously since it was first described in 1943. Some of the earlier searches for “cures” now seem unrealistic in terms of today’s understanding of brain-based disorders. To cure means “to restore to health, soundness, or normality.” In the medical sense, there is no cure for the differences in the brain which result in autism. However, we’re finding better ways to understand the disorder and help people cope with the various symptoms of the disability. Some of these symptoms may lessen as the child ages; others may disappear altogether. With appropriate intervention, many of the autism behaviors can be positively changed, even to the point that the child or adult may appear to the untrained person to no longer have autism. The majority of children and adults will, however, continue to exhibit some symptoms of autism to some degree throughout their entire lives.



Santosg wrote:But the movement in the 'there is not cure for autism' has moved in a different direction. It claims, boldly, that autism itself is just a 'different type of brain,' no better and no worse. These individuals dismiss talk about finding cures for autism in the same way some members of the deaf community feel it is wrong to give deaf children cochlear implants, since there is nothing wrong with being 'deaf.'

The concept of neurodiversity has been around for quite some time. I understand that some parents may feel their child's challenges are minimized by some advocates of ND, and I do not feel that any one person on the spectrum can speak for every other person's experience.

However, in my mind, the concept of acceptance is not mutually exclusive of doing what is ethically possible to help mitigate the challenges. The usual accusation that parents who accept their child's autism do nothing is not true.

Santosg wrote:For instance, in the comment section of this topic on Left Brain Right Brain, that I'm sure is among your favorite medical blogs, you can read the comments of Judith. The completely illogical and idiotic way that Judith examines this problem is so stunning it needs to be quoted at length.

I'm not responsible for someone else's comments on a blog. If you want to take on Judith's opinion, you could do it there. I do like LBRB, it is written by a father who has a son with autism, and he is consistently accurate with facts.


Santosg wrote:When we come to treat autism as natural and simply a normally occurring difference within human populations, we're going to stop funding research that could actually address it fundamentally. You know that Winnie, but you are fine with it, since it fits your ideological outlook. Just come out and say that. Don't act naïve.

I haven't noticed any decline in the number of research articles and studies about treating autism or effective interventions over the years as a result of Neurodiversity. Really, advocates of ND have been around for quite some time. Using your deaf community analogy, research on cochlear implants did not go unfunded due to objections of some in the deaf community.


Santosg wrote:At some level, all interventions that try to 'treat autism' are trying to cure it. ABA and speech are trying to address and improve language deficits, ideally until they are neurotypical. In that way, one can make a legitimate claim that ABA is trying to 'cure' autism.

If you believe that mitigating the challenges is the same as a cure, then you could make that claim. There is not a cure that renders people with autism neurotypical, and I don't believe that "recovery" means the individual's brain becomes neurotypical. The research seems to be showing this -- as do the outcomes of high-profile and much promoted kids who were advertised as "completely recovered" when they were young.


Santosg wrote:And that's the point, that's what made Lovaas so effective. They were not trying to coddle, to handhold, or to hold parades. They were trying to give young children a chance to live a full life. Lovaas was incredibly effective, but his methods are no longer 'legitimate.'

The Lovaas methods that are no longer used were abusive -- read the Life Magazine article -- perhaps you can understand why this is so offensive – especially to people with autism. Really, read it. There is no evidence that his methods were more effective when he slapped and abused children.


Santos, we all evolve during the journey of raising our children, and our experiences along with what we learn along the way shape our evolution. Have you ever thought about how you will explain autism to your son in the future (assuming he is not cured)? Would you tell him that you hate autism and he needs to be cured? Would you want him to blame himself for the problems of those around him? Would you want him to see things like this online (from the ominous Autism Speaks “I Am Autism” promotional video, around 7 years ago):
[…]And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be. [...]


Just food for thought.

Re: Autism Speaks No Longer Seeking Cure

Posted: Wed Oct 19, 2016 11:35 am
by AspieGenes
I want to make a distinction I see. That is, between children who have had different levels of brain development issues while in their mother's womb. I think that for some children development was so affected that there will be no cure. In others, there might be great remission but a continued "sensitivity". Some people children not born with ASD might show symptoms when they are exposed to environmental factors later in life.

The cure for ASD does not lie in working with children, for many of them I see it as too late. But rather, the cure lies in working with the mothers and fathers and environmental groups to reduce exposure to environmental toxins that are already know to play a role in raising autism risk.

It is the same thing that is happening with looking for a cure for cancer. The best cure is not to get it. So instead of spending all the research on the back end, they instead should focus on the front end causes. But I am afraid that would mean a lot of industries would be shut down. So capitalism has us stuck between "progress" and our health.

Re: Autism Speaks No Longer Seeking Cure

Posted: Wed Oct 19, 2016 5:42 pm
by Winnie
AspieGenes wrote:I want to make a distinction I see. That is, between children who have had different levels of brain development issues while in their mother's womb. I think that for some children development was so affected that there will be no cure. In others, there might be great remission but a continued "sensitivity". Some people children not born with ASD might show symptoms when they are exposed to environmental factors later in life.

I've honestly never heard of people developing autism later in life -- is there evidence for that?

AspieGenes wrote:The cure for ASD does not lie in working with children, for many of them I see it as too late. But rather, the cure lies in working with the mothers and fathers and environmental groups to reduce exposure to environmental toxins that are already know to play a role in raising autism risk.

You seem to be describing prevention, as per a presumed cause, not a cure. For the children, adults, and families living with autism, research into effective interventions and treatments for co-morbid conditions matters for the lives that are being lived now.

AspieGenes wrote:It is the same thing that is happening with looking for a cure for cancer. The best cure is not to get it. So instead of spending all the research on the back end, they instead should focus on the front end causes. But I am afraid that would mean a lot of industries would be shut down. So capitalism has us stuck between "progress" and our health.

I'm not a fan of the cancer/autism analogy, but people who are facing death due to cancer -- as well as their loved ones -- would undoubtedly disagree.

I don't see any reason that people should die, meanwhile, in the case of cancer, or in the case of autism, be brushed aside in favor of research focused on prevention. Clearly we need a bigger pie, not a division cutting out the people who are living with autism (or cancer, or whatever) now.

Re: Autism Speaks No Longer Seeking Cure

Posted: Thu Oct 20, 2016 12:10 pm
by AspieGenes
Winnie wrote:
AspieGenes wrote:I want to make a distinction I see. That is, between children who have had different levels of brain development issues while in their mother's womb. I think that for some children development was so affected that there will be no cure. In others, there might be great remission but a continued "sensitivity". Some people children not born with ASD might show symptoms when they are exposed to environmental factors later in life.

I've honestly never heard of people developing autism later in life -- is there evidence for that?

AspieGenes wrote:The cure for ASD does not lie in working with children, for many of them I see it as too late. But rather, the cure lies in working with the mothers and fathers and environmental groups to reduce exposure to environmental toxins that are already know to play a role in raising autism risk.

You seem to be describing prevention, as per a presumed cause, not a cure. For the children, adults, and families living with autism, research into effective interventions and treatments for co-morbid conditions matters for the lives that are being lived now.

AspieGenes wrote:It is the same thing that is happening with looking for a cure for cancer. The best cure is not to get it. So instead of spending all the research on the back end, they instead should focus on the front end causes. But I am afraid that would mean a lot of industries would be shut down. So capitalism has us stuck between "progress" and our health.

I'm not a fan of the cancer/autism analogy, but people who are facing death due to cancer -- as well as their loved ones -- would undoubtedly disagree.

I don't see any reason that people should die, meanwhile, in the case of cancer, or in the case of autism, be brushed aside in favor of research focused on prevention. Clearly we need a bigger pie, not a division cutting out the people who are living with autism (or cancer, or whatever) now.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2857525/
"In the second pattern of onset, regressive autism, children appear to be developing typically for the first year or two. In the second year of life, they lose skills that they had previously acquired, accompanied by the onset of autistic symptoms. The earliest literature on autism made no mention of this onset pattern. "

I do not mean to say that we should not look at the back end at all, but there is a total ignorance or denial regarding the causes which would have a greater impact at a lower cost. Prevention negates the need for a cure, curing autism is like trying to separate milk that is stirred into coffee. People spend their whole lives doing things know to cause cancer but they only worry about it when they get it.

Cancer and Autism are both diseases. We know that for both of them the environment plays a huge role.That was my only point on that. Plus, to me it looks like there is no near cure for low functioning Autism, the changes in the brain are just too profound.
https://books.google.com/books?hl=en&lr ... &q&f=false

Re: Autism Speaks No Longer Seeking Cure

Posted: Mon Oct 24, 2016 3:47 am
by Santosg
Winnie wrote: Using your deaf community analogy, research on cochlear implants did not go unfunded due to objections of some in the deaf community.


That's because the notion that deafness did not require a cure was never mainstreamed. It was not treated as a moral position that should not be challenged. It would be unhurt of for an deafness charity to say they are moving away, disavowing, attempts to cure deafness. The fact that Autism Speaks is moving away from seeking a cure is a shift toward the view that autism is something that should and/or cannot be cured. If you can't see that having one of the most prominent autism 'charities' take such a normatively laden position', one that funds research btw, you obviously are oblivious to the broader social shift this signals.


Winnie wrote:Have you ever thought about how you will explain autism to your son in the future (assuming he is not cured)?


People don't explain autism to autistic people. Their limitations become obvious to themselves. Their inabilities and difficulties are a reality they experience, they live within. Autism is not an intellectual exercise for autistic people, it is a struggle. So, no, I don't think that I could ever explain autism to an autistic person. I could simply explain to them how their behaviors are seen by others, how some of the things they do can be altered, changed, accommodated. I am not one of these religious people who thinks its something heaven sent. I would explain it in terms of his challenges.


Winnie wrote: Would you tell him that you hate autism and he needs to be cured? Would you want him to blame himself for the problems of those around him? Would you want him to see things like this online (from the ominous Autism Speaks “I Am Autism” promotional video, around 7 years ago):
[…]And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be. [...]


Give me a break! This is the lowest form of emotional manipulation, that seeks to make people guilty for expressing the reality of autism for many families. I feel fortunate that my son is a very sweet and kind natured boy. He is not aggressive, but very loving. But I know that there are many families that have to deal with a lot of incredibly difficult behaviors. Your son is in college and does not share the trajectory of many autistic individuals, though even ones that go to college often have their own difficult paths to tread. I remember some years back a woman entered the forum to express her total despair at the behavior of her severely autistic child. You and Jupiter--if I remember correctly--tried to shame her for expressing her feelings.

Actually, I am very happy that you used this example. It illustrated the fact that some people are happy to suffer under some illusion regarding the reality of autism. Nothing in that promotional video was incorrect. It fact, it speaks to the sad reality so many parents and caretakers live with each day with severely autistic individuals or individuals that are autistic but also have antisocial deviations of one kind or another. There are thousands of families that are significantly impacted trying to manage autistic children. Yes, autism breaks up marriages. Yes, money takes families money and puts them into or near bankruptcies. Yes, autism causes parents to not be able to sleep. For instance, in a neighboring town a know a family that had to order a metal 'cage' that accommodates his bed so their son did not wander around the house or go outside during the night, as he'd been doing exactly. They spent nearly a year taking turns staying up, staying with him in his room, trying to keep him from running through the hallways or trying to escape out a window at 3 a.m. He was 7 when they finally got the bed, and these are committed and caring parents. There are many families that are subject to very dangerous levels of violence from autistic individuals. The violence occur without warning. I guess we should not talk about that, since it might be 'mean' to label autistic individuals in this way.

Here's a little point that just might rock your world. Are you ready? My son has autism but my son is not defined by his autism. The conflation of an individual and 'autism'--which is exactly what you are trying to do--is just a byproduct of the multicultural claptrap that has claimed the West. Autism has entered the realm of identity politics in the same way that 'black' or 'gay' has. There is a different between arguing for rights from disenfranchised groups and individuals and seeking to constantly see the world through the prism of these labels.

My son, and all children with autism, are far more than their autistic diagnosis. Inside are children with hopes and dreams, desires and abilities. Unfortunately, they face significant limitations because of autism. Are we to resign ourselves to this reality, are we to simply raise are shoulders and instead make them love their limitations, cheer the barriers, find ways to help them erect more borders between themselves and the world?

I'm not worried about making my son 'love' autism or anything of the sort. I'm not worried about what he might 'read online.' I'm worried about him living a complete life, a life he can live on his terms. I'm worried about having a boy who can't speak, who can't defend himself, about having a man in his 20s who wants to have a job but can't hold down a job, who is in his 30s and would love to have a relationship but can't connect with a woman. Who is lonely and dependent. That's what I worry about. Not some truthful add that can be used by some individuals to try to shame anyone who would speak honestly about autism cause it 'hurts' their feelings and does not further their agenda. That's what keeps me up at night.




Winnie wrote:You seem to be describing prevention, as per a presumed cause, not a cure. For the children, adults, and families living with autism, research into effective interventions and treatments for co-morbid conditions matters for the lives that are being lived now.


Oh boy, that's rich. Were you not the one that posted a link that demonstrated that autistic individuals live nearly 20 years less than the rest of the population.
https://www.washingtonpost.com/news/to- ... udy-finds/
The analysis, conducted by Sweden's Karolinska Institute and published in the British Journal of Psychiatry, found that the leading cause of premature death in autistic adults isn't due to diseases, such as heart ailments or cancer, that are the main killers in the general population. It's suicide.""

Autism is a co-morbid, it speaks to a general issue in brain development, brain function, and or genetic expression. Autism kills. The people who know that the most are the ones that struggle with autism. Autistic individuals kill themselves because of the struggles they face to live life, because autism denies them to reality to reach out and actively participate in the world. They sense this. You mentioned in a previous post about a boy who was severely autistic and non-verbal but had a normal IQ. Can you imagine his life as he gets older? You no doubt would understand the plight of someone like Steven Hawkings. This boys struggle is no different. Most of these won't go away just be holding an occasional parade and pretending that they are 'super-dee-dupper.' There is a moral basis--a true need--to seek out ways to find a cure for autism, above all for autistic individuals. To deny this is to willfully abandon people into a painful, limited future.

Re: Autism Speaks No Longer Seeking Cure

Posted: Mon Oct 24, 2016 6:37 pm
by Santosg
Santosg wrote:
Winnie wrote: Using your deaf community analogy, research on cochlear implants did not go unfunded due to objections of some in the deaf community.


That's because the notion that deafness did not require a cure was never mainstreamed. It was not treated as a moral position that should not be challenged. It would be unhurt of for an deafness charity to say they are moving away, disavowing, attempts to cure deafness. The fact that Autism Speaks is moving away from seeking a cure is a shift toward the view that autism is something that should and/or cannot be cured. If you can't see that having one of the most prominent autism 'charities' take such a normatively laden position', one that funds research btw, you obviously are oblivious to the broader social shift this signals.


Winnie wrote:Have you ever thought about how you will explain autism to your son in the future (assuming he is not cured)?


People don't explain autism to autistic people. Their limitations become obvious to themselves. Their inabilities and difficulties are a reality they experience, they live within. Autism is not an intellectual exercise for autistic people, it is a struggle. So, no, I don't think that I could ever explain autism to an autistic person. I could simply explain to them how their behaviors are seen by others, how some of the things they do can be altered, changed, accommodated. I am not one of these religious people who thinks its something heaven sent. I would explain it in terms of his challenges.


Winnie wrote: Would you tell him that you hate autism and he needs to be cured? Would you want him to blame himself for the problems of those around him? Would you want him to see things like this online (from the ominous Autism Speaks “I Am Autism” promotional video, around 7 years ago): And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be....


Give me a break! This is the lowest form of emotional manipulation, that seeks to make people guilty for expressing the reality of autism for many families. I feel fortunate that my son is a very sweet and kind natured boy. He is not aggressive, but very loving. But I know that there are many families that have to deal with a lot of incredibly difficult behaviors. Your son is in college and does not share the trajectory of many autistic individuals, though even ones that go to college often have their own difficult paths to tread. I remember some years back a woman entered the forum to express her total despair at the behavior of her severely autistic child. You and Jupiter--if I remember correctly--tried to shame her for expressing her feelings.

Actually, I am very happy that you used this example. It illustrated the fact that some people are happy to suffer under some illusion regarding the reality of autism. Nothing in that promotional video was incorrect. It fact, it speaks to the sad reality so many parents and caretakers live with each day with severely autistic individuals or individuals that are autistic but also have antisocial deviations of one kind or another. There are thousands of families that are significantly impacted trying to manage autistic children. Yes, autism breaks up marriages. Yes, money takes families money and puts them into or near bankruptcies. Yes, autism causes parents to not be able to sleep. For instance, in a neighboring town a know a family that had to order a metal 'cage' that accommodates his bed so their son did not wander around the house or go outside during the night, as he'd been doing exactly. They spent nearly a year taking turns staying up, staying with him in his room, trying to keep him from running through the hallways or trying to escape out a window at 3 a.m. He was 7 when they finally got the bed, and these are committed and caring parents. There are many families that are subject to very dangerous levels of violence from autistic individuals. The violence occur without warning. I guess we should not talk about that, since it might be 'mean' to label autistic individuals in this way.

Here's a little point that just might rock your world. Are you ready? My son has autism but my son is not defined by his autism. The conflation of an individual and 'autism'--which is exactly what you are trying to do--is just a byproduct of the multicultural claptrap that has claimed the West. Autism has entered the realm of identity politics in the same way that 'black' or 'gay' has. There is a different between arguing for rights from disenfranchised groups and individuals and seeking to constantly see the world through the prism of these labels.

My son, and all children with autism, are far more than their autistic diagnosis. Inside are children with hopes and dreams, desires and abilities. Unfortunately, they face significant limitations because of autism. Are we to resign ourselves to this reality, are we to simply raise are shoulders and instead make them love their limitations, cheer the barriers, find ways to help them erect more borders between themselves and the world?

I'm not worried about making my son 'love' autism or anything of the sort. I'm not worried about what he might 'read online.' I'm worried about him living a complete life, a life he can live on his terms. I'm worried about having a boy who can't speak, who can't defend himself, about having a man in his 20s who wants to have a job but can't hold down a job, who is in his 30s and would love to have a relationship but can't connect with a woman. Who is lonely and dependent. That's what I worry about. Not some truthful add that can be used by some individuals to try to shame anyone who would speak honestly about autism cause it 'hurts' their feelings and does not further their agenda. That's what keeps me up at night.




Winnie wrote:You seem to be describing prevention, as per a presumed cause, not a cure. For the children, adults, and families living with autism, research into effective interventions and treatments for co-morbid conditions matters for the lives that are being lived now.


Oh boy, that's rich. Were you not the one that posted a link that demonstrated that autistic individuals live nearly 20 years less than the rest of the population.
https://www.washingtonpost.com/news/to- ... udy-finds/
The analysis, conducted by Sweden's Karolinska Institute and published in the British Journal of Psychiatry, found that the leading cause of premature death in autistic adults isn't due to diseases, such as heart ailments or cancer, that are the main killers in the general population. It's suicide.""

Autism is a co-morbid, it speaks to a general issue in brain development, brain function, and or genetic expression. Autism kills. The people who know that the most are the ones that struggle with autism. Autistic individuals kill themselves because of the struggles they face to live life, because autism denies them to reality to reach out and actively participate in the world. They sense this. You mentioned in a previous post about a boy who was severely autistic and non-verbal but had a normal IQ. Can you imagine his life as he gets older? You no doubt would understand the plight of someone like Steven Hawkings. This boys struggle is no different. Most of these won't go away just be holding an occasional parade and pretending that they are 'super-dee-dupper.' There is a moral basis--a true need--to seek out ways to find a cure for autism, above all for autistic individuals. To deny this is to willfully abandon people into a painful, limited future.[/quote]

Re: Autism Speaks No Longer Seeking Cure

Posted: Tue Feb 28, 2017 5:30 pm
by Beee
On LBRB I posted all the comorbids associated with autism. These are from Wikipedia. I did not make them up. I, probably more than anyone, want a cure for autism. I posted as "Judith" Matt Carey's reply is that my post made no sense. Thank you for calling me idiotic . I only meant that AS should be helping all aspects of autism, a cure, life skills, inclusion, education, independence, confidence, and recreation, a safe place to live, health care, etc. Santosg, please forgive my ignorance. I have a grown son with autism that includes all the bells and whistles plus many comorbids.