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ASPartOfMe
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08 Aug 2023, 10:44 am

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Hari Srinivasan is a Ph.D. neuroscience student at Vanderbilt University, an alum of UC Berkeley, PD Soros Fellow, Public Voices Fellow of The OpEd Project, NISE fellow at the Frist Center for Autism & Innovation, and selected to the NIMH's Interagency Autism Coordinating Committee. He is also on the boards/advisory boards of DREDF, ASAN, ASA, INSAR, Duke U's ACE, Autism Europe and The Brain Foundation.

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For 20 years, a young woman was misdiagnosed with schizophrenia, rather than the chronic inflammation in her body and brain caused by a very treatable form of atypical lupus. The correct diagnosis led to appropriate treatment and a significant turnaround in her quality of life. For those 20 years she had been institutionalized and loaded with antipsychotics and mood stabilizers to "manage" her behaviors.

My own experience also reveals a disheartening lack of progress in practical solutions for autistics like me in the past 2.5 decades, since my diagnosis as a toddler.

I'm autistic with significant support needs. My limited speaking ability and my extensive sensorimotor dysregulation issues are just the tip of the iceberg. My brand of autism includes other issues such as, but not limited to, obsessive-compulsive disorder (OCD), mood regulation, health issues and attention-deficit/hyperactivity disorder (ADHD), all of which impact both my physical and mental well-being.

Within the autism community, two seemingly opposing camps have emerged—adult self-advocates influenced by historic views strongly oppose anything related to the medical model and emphasize the strengths and capabilities of individuals. On the other hand, parent groups seem to focus on medical-based solutions that address the underlying physiological and medical challenges faced by their autistic children, many of whom grow into adults with significant long-term support and health needs.

What is troubling is that many believe that it must be an either-or scenario.

The historic view of disability as a purely medical condition had resulted in segregation, dehumanizing institutionalization (like the infamous Willowbrook State School, showcased in the 2020 documentary Crip Camp), and even eugenics to prevent "defective genes" being passed on. The deeply troubling and terrible injustices of the past have led to vilification of any medical associated intervention by the disability rights movement.

The social model on the other hand was the basis of the early disability rights movement, which fought for desegregation, deinstitutionalization, and accessibility. The social model promotes the idea that disability should be understood as a form of diversity rather than a defect or deficiency. The social model advocates for changes in attitudes, policies, and environments to create an inclusive society where the disabled can participate fully and equally.

However, autism already faces the problem of diagnostic overshadowing where anything and everything is attributed to the mysterious bucket of "it's all part of autism so live with it, nothing more need be done," by medical professionals. Ironically, the same underlying issues would get treated if the autism label were not attached to that person.

We must dispel the notion that any medical intervention is inherently harmful. Many autistic peers I know experience chronic sleep deprivation, multiple seizures, pain, autoimmune conditions, or have to spend the entire night on the toilet due to gut issues. Many of my autistic peers engage in intense self-injurious behaviors, aggressive behaviors, and frequent meltdowns, which leave them home-bound. Living in a state of chronic unwellness is not conducive for inclusion. The quality of life for such autistics is challenging, no matter what kind of societal supports (inadequate as they are currently), or opportunities are put in place for inclusion.

The solution for such autistics cannot be like the young woman above with the liberal use of the psychotropic medications, which are unreliable Band-Aids with long-term health effects. Many of my peers in special education slowly disappeared into the black hole of being sent away to the modern day equivalents of institutions as their behaviors were no longer "manageable" at home or in a community setting. Out of sight also means out of mind for society.

The heterogeneity of autism calls for a multifaceted approach that combines strengths-based opportunities and challenges-based solutions unique to each individual.

Strengths-based opportunities are what the disability rights movement has always advocated and include education, technology, communication support, and accommodations, which have empowered individuals like myself. Such an approach allowed me access to a college education at prestigious institutes like Berkeley and Vanderbilt.

Challenge-based solutions involve researching physiology, brain biology, gene-environment interactions, biomarkers, precision medicine, sensorimotor supports, and developing long-term supports, treatments, and technologies. Such care also needs to be part of routine care and delivered in mainstream settings for autistics that need these solutions. Neglecting these challenges leads to marginalization and impedes true inclusion and belonging.

Scientists now believe that underlying autoimmune and inflammatory processes may be more common than thought earlier. Perhaps some of our issues are just a simple physiological solution away, which can mean a huge improvement in our quality of life.

To drive true progress and improve the quality of life of all autistics, we must recognize a dual based approach. It does not have to be either-or.


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carlos55
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08 Aug 2023, 1:48 pm

There already is a dual approach to autism & everything its been in place for nearly 200 years?

Its called Science and Religion

The state and its medical services follow the science because its the only one provable and based in reality. People can opt out to follow their own belief structure, this happens today.

If you get involved in an accident the medical services will give you a blood transfusion automatically if you need it.

Some religions forbid blood transfusions, some people who follow them wear a necklace or something similar advising "no blood" and medical services respect that, even if it means death.

There was a big news item in the US over 20 years ago Bush II banned some types of genetic science to appease the Christian right causing outrage among scientists and those with genetic disorders.

I`m sure that's since probably been reversed?

So two things including those who see their autism as their identity and those that want to follow the medical model or be "cured", can exist side by side its only extremists that try to impose their view on the other side.

What ever happened to the Christian Right or evangelicals by the way? they used to be a big voting block with a lot of influence, we don't hear much about them these days are they all disgruntled Trump fans?


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09 Aug 2023, 3:53 am

I have the inverse of the whole problem;

I'm all in all identify an autistic, and as person with autism issues.

Yet people around me believes my issues are all about autism, or a part of autism -- that there's nothing can be done about it.
All accusing me of not accepting autism -- as if they know what they're talking about. :roll:

... They don't see me as someone with whatever crap I'm struggling to cope who happened to be autistic.

It's not just the so-called advocates, anti treatment/anti cure NDs or otherwise.
These people are also professionals.

My experience tells me it's just more ignorance.


There are differences between "being autistic", "having autism" and coping with common crap that could've been avoided or solved if people could fricking listen to me instead of psychoanalyzing or accusing me of being a fricking brat about the female body.

I have that amount of discernment and experience to a wider range of contrasts of states, to a point that anyone saying "anxiety is a part of autism" is cringe.
Anxiety is a human thing can could've prevented with enough knowledge and means, not an entirely unavoidable autistic thing.

My own experience proves that statement wrong, and I'm not even taking meds or self medicating for it.

My communication and language issues ARE an autistic thing; and it's just exacerbated by everything else.
People confuse the basis of my issues or the trajectory that translates into limitations from what worsens it.

I'll be fine with whatever baseline issues I have with autism, but not while dealing with something else that makes the issues worse than it supposed to.

So I'm very hyperaware and possibly paranoid about diagnosis overshadowing.
To a point that I wouldn't communicate being autistic to any doctors related to any biological issues.

People can't seem to separate my autism from dealing with crap as a human.
They mistook whatever hormonal issues I have as "being autistic" and my regulated self as "being normal". :roll:
They don't know the difference between healthy from so called "normal".

I want to be a healthy autistic.
This is not a contradiction. Yet people do not see it that way. It's frustrating.

I would want an anti-inflammatory treatment alright -- it'll likely make my body more comfortable and be less irritable.
Or heal whatever psychological hung ups I have to a point that autism cannot explain it yet blames autism for it.

Just because it'll turn me into a functioning person, that doesn't mean becoming 'less autistic' -- just less dysfunctional.
Again, people do not see the difference.

I'm not even sure how many experienced the difference -- I had. It's very different in the inside as it is outside.
The change did not stop me from being autistic, and I didn't lose autism -- but gain more as an autistic person.


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MatchboxVagabond
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09 Aug 2023, 12:50 pm

It seems to me that a lot of this comes down to how you view autism and the consequences of being autistic. A lot of the worst of it isn't inherent to autism, and people are rightly concerned that the focus on finding a cure for autism versus finding a way of treating/curing some of the more problematic traits is going to win out. There's already been a major problem in terms of the people that missed out on diagnosis due to inadequate screening getting screwed out of any support or help because of the historic bias towards only identifying the most glaringly obvious examples. It's part of why self-diagnosis is likely going to be with us for quite some time as there's a significant portion of the autistic community that doesn't qualify for any sort of diagnosis or treatment, even though they're not necessarily less impacted by it.

That being said, I expect that as time goes by and the methods available for studying the brain improve, that there will come a time when there can be targeted treatments and potential cures for the parts that are causing the bulk of the problem. It's just a shame that the same people pushing the hardest for a cure are often the same ones that think that torturing autistic people into masking themselves are the ones pushing for cures the hardest.



ASPartOfMe
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10 Aug 2023, 4:17 am

MatchboxVagabond wrote:
It seems to me that a lot of this comes down to how you view autism and the consequences of being autistic. A lot of the worst of it isn't inherent to autism, and people are rightly concerned that the focus on finding a cure for autism versus finding a way of treating/curing some of the more problematic traits is going to win out. There's already been a major problem in terms of the people that missed out on diagnosis due to inadequate screening getting screwed out of any support or help because of the historic bias towards only identifying the most glaringly obvious examples. It's part of why self-diagnosis is likely going to be with us for quite some time as there's a significant portion of the autistic community that doesn't qualify for any sort of diagnosis or treatment, even though they're not necessarily less impacted by it.

That being said, I expect that as time goes by and the methods available for studying the brain improve, that there will come a time when there can be targeted treatments and potential cures for the parts that are causing the bulk of the problem. It's just a shame that the same people pushing the hardest for a cure are often the same ones that think that torturing autistic people into masking themselves are the ones pushing for cures the hardest.

There is controversy over what causes the difficulties autistics endure, Autism itself, societal judgment over what is bad, co-morbid illnesses, or some sort of combination. This is the heart of the "Autism Wars".

There is the sub controversy over what are co-morbid illnesses and what are Autistic negative traits?

In a perfect world, research should suss these out. Everything is so political I fear results from the research will be interpreted through the lens of personal biases.


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MatchboxVagabond
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10 Aug 2023, 6:10 pm

ASPartOfMe wrote:
MatchboxVagabond wrote:
It seems to me that a lot of this comes down to how you view autism and the consequences of being autistic. A lot of the worst of it isn't inherent to autism, and people are rightly concerned that the focus on finding a cure for autism versus finding a way of treating/curing some of the more problematic traits is going to win out. There's already been a major problem in terms of the people that missed out on diagnosis due to inadequate screening getting screwed out of any support or help because of the historic bias towards only identifying the most glaringly obvious examples. It's part of why self-diagnosis is likely going to be with us for quite some time as there's a significant portion of the autistic community that doesn't qualify for any sort of diagnosis or treatment, even though they're not necessarily less impacted by it.

That being said, I expect that as time goes by and the methods available for studying the brain improve, that there will come a time when there can be targeted treatments and potential cures for the parts that are causing the bulk of the problem. It's just a shame that the same people pushing the hardest for a cure are often the same ones that think that torturing autistic people into masking themselves are the ones pushing for cures the hardest.

There is controversy over what causes the difficulties autistics endure, Autism itself, societal judgment over what is bad, co-morbid illnesses, or some sort of combination. This is the heart of the "Autism Wars".

There is the sub controversy over what are co-morbid illnesses and what are Autistic negative traits?

In a perfect world, research should suss these out. Everything is so political I fear results from the research will be interpreted through the lens of personal biases.

Indeed, fortunately, between brain imaging, genetic studies and machine learning assisted studies, we should hit a point where folks can have dinner level of agreement about what folks think. Even if the what to do about it remains controls.



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19 Aug 2023, 6:06 am

carlos55 wrote:
There already is a dual approach to autism & everything its been in place for nearly 200 years?

The very idea of "autism" is only a little over 100 years old, so that's obviously not possible.

carlos55 wrote:
Its called Science and Religion

The state and its medical services follow the science because its the only one provable and based in reality. People can opt out to follow their own belief structure, this happens today.

You seem to be claiming here that: (1) science should be driven only by purely scientific concerns and nothing else, and (2) any and all qualms anyone might have about the conduct of science are rooted in "religion."

Scientific research has always been funded, or not, by people with personal, more-than-purely-scientific motives (e.g. rich folks whose parents died of whatever disease), and/or by governments based on perceived national interests (e.g. the space race).

And the ethical concerns that some people have about the conduct of science are not necessarily rooted in religion. For an extreme example, would you argue that the objections to Tuskegee experiment were rooted purely in religion? And would you argue that there shouldn't be laws against this kind of harmful and nonconsensual experimentation, because any such laws are based on concerns other than the purely scientific?

The social model of disability is not "religion." The social model of disability is about making people's lives more livable in the here-and-now. For example, without the social model of disability, we would not have wheelchair-accessible buildings, wheelchair-accessible buses, or curb cuts. These are improvements that happened within my lifetime, thanks to advocacy by the disability rights movement.

Of course, research into possible cures or treatments for various conditions that can cause people to lose their ability to walk is still ongoing, and that's NOT a problem, in this case, because:

(1) There was never a popular delusion that it would be possible to find cures for all purely physical mobility impairments within only a few years.

(2) There is less stigma associated with purely physical disability, hence less danger of the medical model being used in harmful ways due to sheer disrespect for the disabled person. Therefore, in the case of purely physical disability, there has not been as much reason (in recent decades, at least) to fear that the scientific establishment was failing to take into account potential harms of attempted cures.

So, in the case of purely physical disability, most people today accept that both the medical model and the social model have their place (although most people wouldn't use the words "social model" and "medical model").

carlos55 wrote:
What ever happened to the Christian Right or evangelicals by the way? they used to be a big voting block with a lot of influence, we don't hear much about them these days are they all disgruntled Trump fans?

They are still very much around, even if they aren't, in and of themselves, making much international news these days. They are still one of the major driving forces of the "culture wars," a term you've probably heard more often these days.


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carlos55
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19 Aug 2023, 5:00 pm

Mona Pereth wrote:
carlos55 wrote:
There already is a dual approach to autism & everything its been in place for nearly 200 years?

The very idea of "autism" is only a little over 100 years old, so that's obviously not possible.

carlos55 wrote:
Its called Science and Religion

The state and its medical services follow the science because its the only one provable and based in reality. People can opt out to follow their own belief structure, this happens today.

You seem to be claiming here that: (1) science should be driven only by purely scientific concerns and nothing else, and (2) any and all qualms anyone might have about the conduct of science are rooted in "religion."

Scientific research has always been funded, or not, by people with personal, more-than-purely-scientific motives (e.g. rich folks whose parents died of whatever disease), and/or by governments based on perceived national interests (e.g. the space race).

And the ethical concerns that some people have about the conduct of science are not necessarily rooted in religion. For an extreme example, would you argue that the objections to Tuskegee experiment were rooted purely in religion? And would you argue that there shouldn't be laws against this kind of harmful and nonconsensual experimentation, because any such laws are based on concerns other than the purely scientific?

The social model of disability is not "religion." The social model of disability is about making people's lives more livable in the here-and-now. For example, without the social model of disability, we would not have wheelchair-accessible buildings, wheelchair-accessible buses, or curb cuts. These are improvements that happened within my lifetime, thanks to advocacy by the disability rights movement.

Of course, research into possible cures or treatments for various conditions that can cause people to lose their ability to walk is still ongoing, and that's NOT a problem, in this case, because:

(1) There was never a popular delusion that it would be possible to find cures for all purely physical mobility impairments within only a few years.

(2) There is less stigma associated with purely physical disability, hence less danger of the medical model being used in harmful ways due to sheer disrespect for the disabled person. Therefore, in the case of purely physical disability, there has not been as much reason (in recent decades, at least) to fear that the scientific establishment was failing to take into account potential harms of attempted cures.

So, in the case of purely physical disability, most people today accept that both the medical model and the social model have their place (although most people wouldn't use the words "social model" and "medical model").

carlos55 wrote:
What ever happened to the Christian Right or evangelicals by the way? they used to be a big voting block with a lot of influence, we don't hear much about them these days are they all disgruntled Trump fans?

They are still very much around, even if they aren't, in and of themselves, making much international news these days. They are still one of the major driving forces of the "culture wars," a term you've probably heard more often these days.


By religion i mean belief in things that fall outside of science, by which i mean many of the theories that many ND followers have that autism is just a natural difference rather than a disorder.

By science i mean things that can be measured, seen and based in reality like 2+2 =4.

Science says autism is a disorder, for multiple reasons, this can be seen & measured and based on reality

1. Autism diagnosis is diagnosed on things people cannot do which they should be able to do for example humans have a voice box so should be able to talk, when someone cannot talk its a disorder.

2. Many of the genes related to autism are the result of mutations or faults preventing that gene from doing what its supposed to do, you can look up any of these genes or visit spectrum news which regularly have articles about autism genes and loss of function (loss of function=disorder)

https://www.genecards.org/
https://www.spectrumnews.org/news/

It doesn't mean science does what it wants of course, but does mean health services or governments follow the science rather than belief structures that fall outside of it that have no evidence to back that up.

Also just as importantly science fact = disability = help in the form of carers, welfare & housing.

The government don't pay money to people or help them because they are different like gay or black etc but because they have a disability, so government policy =health policy = science = help

Also the social model of disability was never invented to replace science but rather to run alongside of it this was even acknowledged by the person who invented the idea.

That said people should have the right to follow their own belief with regards to their health outside of science just not impose it on the rest of us forcefully.


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