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Metabolism of autism reveals developmental origins

medicalxpress.com

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Re: Metabolism of autism reveals developmental origins

#261

Post by Perenti »

zazazache wrote: post #248

As some one who is let’s say “autism adjacent” it really bothers me when people discuss a cure or prevention. I mean I get it, but this is also who I am and I wouldn’t want to be someone else.

I'm on the spectrum (diagnosed), and also like being me (most of the time).

But what about the poor sods who have so much happening all the time that they don't get the chance to learn to speak, or read, and scream in terror continually at the unending sensory deluge they try to live through? If there was a way to prevent that kind of presentation of ASD I think everyone would be better off. I took "prevention" to be about prevention of the life restricting developments of the condition.

On the other hand, if "prevention" is about culling the gene pool, I'm dead set against that.

Re: Metabolism of autism reveals developmental origins

#262

Post by Thorrez »

zazazache wrote: post #248

As some one who is let’s say “autism adjacent” it really bothers me when people discuss a cure or prevention. I mean I get it, but this is also who I am and I wouldn’t want to be someone else.

The article seems to be focused on people who are unable to live independently.

>For the majority of people with ASD, the condition is a significant disability, with only 10–20% of children diagnosed before 5 years of age able to live independently as adults.

Re: Metabolism of autism reveals developmental origins

#263

Post by Perenti »

ModernMech wrote: post #28

"Prevention strategies" As an autistic person, no thanks. Let people be autistic.

I'm diagnosed ASD as well and I strongly disagree with your statement as it stands.

There are people who are profoundly impacted by autism. I _can_ go to a shopping center. I don't like it. I may have to hide in the bathrooms for a while a few times while visiting but I _can_ do it.

But I know people who spend most of their lives in fear, because there is just so damn much going on around them all the time. Their senses are turned up to the point that the sound of their own breath is like a lion roaring. The splash of light across the curtains as a car turns into the street is like a lightning flash. Sounds, sights, flavours, smells, tactile sensations all turned up to 15 on a scale of 1 to 10.

Often these kinds of people never learn to talk, or read. They end up living in homes (modern asylums) because they need constant care. And inside they're screaming in terror all the time. Sometimes they scream aloud.

I believe these people deserve better. Helping prevent the development of severe disability is what I believe the article is talking about, not eugenics.

Re: Metabolism of autism reveals developmental origins

#264

Post by Perenti »

faeriechangling wrote: post #180
Scarblac wrote: post #86

Earlier quoted context omitted.

This is about people diagnosed before the age of 5, they're almost all cases of severe autism. That's very different from the kind of autism you're talking about. People who are permanently unable to live independently have a condition that should be prevented if possible.

I was diagnosed at 4, I have legal paperwork proving I permanently cannot live independently, as such paperwork is necessary for impoverished families and adults to access certain social and financial benefits. I currently live independently. Despite me being in this category you describe, I do not believe I have a condition that should be prevented if possible. I see researchers like FTA as having a conflict of inte…

The level of severity being discussed here is non-verbal, screaming all the time, just in a state of abject terror. These people have _severe_ ASD.

Re: Metabolism of autism reveals developmental origins

#265

Post by Perenti »

robocat wrote: post #153
zwaps wrote: post #134

Earlier quoted context omitted.

Why not ask autistic people Have you ever even seen someone with severe autism?

Strongly yes as per other comment: https://news.ycombinator.com/item?id=40329772

But she could talk? And touch another person without screaming? Because _severe_ autism is non-tactile and non-verbal.

Re: Metabolism of autism reveals developmental origins

#266

Post by Perenti »

mewpmewp2 wrote: post #202
munchler wrote: post #71

Earlier quoted context omitted.

Some people are severely disabled by autism. Are you suggesting that we should just let them suffer?

It's not the autism that does any sort of disabling. If there are some sort of issues that are disabling someone's way to live normally, deal with them, but don't use autism as a label or call it a disease. There's no "autism" as a "disease" that causes those symptoms.

So what's the issue with non-verbal "autistic" people then? All those people with the same symptoms and presentation, if that's not a disease or better, a disorder, then what is it?

Re: Metabolism of autism reveals developmental origins

#267

Post by Log_out_ »

zazazache wrote: post #248

As some one who is let’s say “autism adjacent” it really bothers me when people discuss a cure or prevention. I mean I get it, but this is also who I am and I wouldn’t want to be someone else.

Its also missing how speacalists with traits and hyperfocus are the driving force behind a ton of research. Then again having a retarded kid is like having a 60 ton weight attached to you for life. Yes, yes, we are not allowed to say this, but thats easily said by those who don't wear the weights.

Re: Metabolism of autism reveals developmental origins

#268

Post by Perenti »

jeroenhd wrote: post #112
throwaway2562 wrote: post #62

Earlier quoted context omitted.

Here’s hoping. Autism is pure hell for some families. Unless of course self-declared leaders of the ‘neurodivergent community’ declare such efforts to be genocidal, modern eugenics, and so on. Relatedly, I was struck to see the recent breakthrough in curing congenital deafness condemned by members of the ‘deaf community’ on Twitter. So we unfortunately have good reason to expect the same kinds of folly here.

I've seen the same protests among certain deaf communities and it baffles me that someone would oppose a cure to what is obviously a medical condition. In the same vein, I wouldn't oppose a cure for autism, despite my own diagnosis. Why go through the pain and suffering that comes with autism in a world of non-autists? I've seen more than enough of the lives of people with non-high functioning autism to realise the a…

Remember, the article is talking about people with profound disability, not people who can comment in forums. I think it would be fantastic _if_ there's a set of markers in a young infant that can be acted on preventing non-verbal, constantly in terror, withdrawn inmates of special hospitals. I don't think they're talking about my dislike of telephones, or fear of shopping centers, or frequent confusion with figurative versus literal language.

Even though the last thing has got me in fights more than once. Fights that are sudden, surprising and unwarranted to me, but completely expected given how I reacted to what someone said.

Re: Metabolism of autism reveals developmental origins

#269

Post by Perenti »

RobotToaster wrote: post #19
faeriechangling wrote: post #2

> The researchers discovered that a small number of biochemical pathways are responsible for the majority of these changes, which could help inform new early detection and prevention strategies for autism. It won’t. Autism is a socioculturally bound diagnosis, not a single disease that exists in biology. It’s a label for those perceived by others in a certain light, defined in such a way that two with the same label…

IMO, it will probably end up like Ehlers Danlos, where you have 20 or so subtypes defined by certain genes.

EDS is also highly associated with ADHD and ASD.

Re: Metabolism of autism reveals developmental origins

#270

Post by Broken_Hippo »

mrangle wrote: post #215

>suramin They're investigating the use of a drug that they don't understand to treat a condition that they don't understand, through the lens of one model that variously competes with or incompletely conforms to a myriad of other models of the condition. In order to what? Nebulously "manage" a complex neurological difference that will always defy reversion to anything else? It sounds like they want something that the…

They're investigating the use of a drug that they don't understand to treat a condition that they don't understand...

You'd probably be shocked to figure out how often this happens - and it used to happen a lot more in no small part because we didn't have the tools we have today: MRIs and better microscopes and other tech has really helped our understanding of the body. We are still figuring out how exactly the body works, after all, to the point that we occasionally discover a new body part. Of course we are going to do things we don't understand. Yet.

This isn't limited to medicine, either.

Maybe they want something to prescribe. For a lot of diseases, that's better than nothing. For example, I have MS. They know more than they used to about MS, but most of my life they've not known enough. I have medicine that isn't a cure, but I'll take it. Modern medicines mean that modern folks with MS have a much better quality of life than folks that didn't have medications. I'm more likely to have mobility and things like that. I'll take it.

My ex was schizophrenic. Medicine gave them a life. They still couldn't work, but they weren't suffering as much either. Again, not a cure, but help.

Imperfect cures or medicines that treat the symptoms are so much better than no help at all. This is where a lot of medicine starts - treating a symptom, and by doing so learning a bit more about the disease or affliction.

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