Autism mom fights back against the anti-prevention mindset

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carlos55
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10 Sep 2021, 2:25 am

https://ncsa-admin.medium.com/our-moral ... 9933bce62d

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Our Moral Duty to Prevent Autism

An autism mom fights back against the anti-prevention mindset popular among “neurodiversity” adherents.
By Alicia Mesa

In my moral universe — and probably yours — we humans have a strong duty to prevent neurological disability, and this includes autism.

But online I see this moral universe has turned upside down. “Neurodiversity” proponents wage online battles fiercely condemning the idea of preventing autism. Autism studies such as Autism 10K in the UK, and the huge SPARK autism study sponsored by the Simons Foundation have been caught in the crosshairs of denouncers who jeer at autism causation research and liken it to “eugenics.”

How nice that these anti-prevention advocates have such cognitive privilege that they even know what eugenics means or how to tweet on Twitter. Surely they must cherish their own mental faculties even as they fight against preventing mental disability in others.

Every day I witness the immense dysfunction and incalculable suffering caused by autism, not to mention the massive burdens on families, schools and adult services. For my son Pablito, autism has meant a life of helplessness and self-injury, requiring a small army of caregivers round the clock. At home it means constant chaos, noise and cleaning, on top of strained finances, sleeplessness and social isolation.

Would I want Pablito’s autism to have been prevented? Oh yes, a thousand times yes. Til my dying breath, yes. And I know nearly every human on this planet would too.

Neurodiversity soldiers, have you not noticed that our society is doggedly devoted to preventing brain disability? Are you opposed to this? We don’t drink alcohol in pregnancy. We take prenatal vitamins that helps prevent neural tube defects. We check on the mother’s thyroid function, because low thyroid can mean mental impairment in the child. We perform heel pricks at birth to detect PKU, a metabolic condition that if left unaddressed results in severe cognitive impairment. We vaccinate both mother and child to prevent infections that could lead to brain damage. We try to prevent prematurity, which is associated with impaired brain development. We work to prevent maternal drug use, knowing that babies can be born addicted, suffering from ADHD and learning and behavioral problems.

We educate parents about nutrition and shaken baby syndrome. Obstetricians and nurses work feverishly to prevent hypoxia in fetuses and newborns, which can lead to brain damage. Each year the NIH and FDA spend millions on studies that will help prevent mental impairment in children. Francis Kelsey is a national hero because when she worked at the FDA she prevented the U.S. marketing of a German drug called thalidomide, which in fetuses could cause ghastly limb defects and autism, among other things. And why do you think we banned lead paint?!

We do all this, and more, because as moral human beings we know we have an affirmative duty to prevent brain abnormalities that can condemn people to a life of disability, dysfunction and dependence.

Rates of autism have increased astronomically in the U.S. and here in my state of California. Even limited to its more severe forms, autism cases here have surged 4,000% over the past three decades. In the vast majority of cases, like Pablito’s, we still don’t know the causes. Defective genes are found in only about 10% of cases — and most of those defects are “de novo,” or newly arising in the patient and not inherited from either parent. We are still light years away from knowing which autisms may be preventable and which are not.

The anti-prevention advocates seem to fear that fetuses with a genetic marker for autism will be aborted. But this fear is unfounded. Decades of research have shown there is no such genetic marker. Instead, prevention will come in the form of understanding why early brain development goes awry in autism, and taking steps to prevent those forces. Are they environmental? Gene-environment? Epigenetic? Something in the mother’s egg? In the father’s sperm? In the tiny embryo? We don’t yet know. And for the portion of cases caused by new mutations, maybe we can take steps to prevent those mutations from occurring in the first place.

As a devout Catholic staunchly opposed to abortion, and a strong believer in the sanctity of human life, I would agree that even if it were feasible abortion is not the answer. But like it or not, genetic counseling for parents-to-be is routine all over the world. Are the neurodiversity advocates opposed to all genetic counseling, or just counseling that involves autism risk? Their position reeks of hypocrisy.

Every time we prevent mental disability we have performed a work of mercy in God’s eyes, and a peak achievement for science and humanity. Researchers —never, ever apologize for doing research that could lead to the prevention of autism or any other mental disorder. Don’t backpedal, we desperately need answers. There is no higher calling.
Alicia Mesa is an autism mom and autism research advocate living in Northern California.
Learn more about National Council on Severe Autism at NCSAutism.org.


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Double Retired
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10 Sep 2021, 11:38 am

I'm very glad I wasn't "prevented". And the more I learn the more I believe that...in many ways...Autism was an advantage for me.

(Your experience might be different.)


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carlos55
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10 Sep 2021, 1:37 pm

Double Retired wrote:
I'm very glad I wasn't "prevented". And the more I learn the more I believe that...in many ways...Autism was an advantage for me.

(Your experience might be different.)


I dont believe she is advocating for abortion rather to prevent severe forms of autism developing in the unborn child.

Also she is referring to the severely disabling types of autism rather than Ellon Musk or yourself.


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10 Sep 2021, 5:03 pm

carlos55 wrote:
Double Retired wrote:
I'm very glad I wasn't "prevented". And the more I learn the more I believe that...in many ways...Autism was an advantage for me.

(Your experience might be different.)


I dont believe she is advocating for abortion rather to prevent severe forms of autism developing in the unborn child.

Also she is referring to the severely disabling types of autism rather than Ellon Musk or yourself.
You may be correct but if that is what she is thinking then I think it is premature. Until Autism is better understood we don't know if that is an appropriate goal.

My understanding is SPARK has--so far--identified more than 100 genetic variances that individually may or may not cause Autism. That sounds like there is a possibility the Autism Spectrum might encompass 100+ genetically distinct disorders. But they don't know that yet, and I still read assertions that there are environmental influences, too.

So we don't know if I have mild Autism symptoms because I got a gene that causes mild Autism or if I got a gene that causes Autism and an upbringing that kept it mild.

I think my upbringing was immensely influential in keeping my Autism mild. Brought up differently, and without the many lucky breaks I had, I believe my Autism symptoms could easily have been much, much more severe.


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When diagnosed I bought champagne!
I finally knew why people were strange.