Brain experiment reverses effects of autism-linked gene

[Ken]

I saw this article this morning and would like to hear your thoughts...

Lab-Grown Brain Experiment Reverses The Effects of Autism-Linked Gene

For me, articles like this sets me on fire.

It implies that Pitt-Hopkins Syndrome is an autistic spectrum disorder characterized by intellectual disability.

I find such research deeply insulting. Do they believe Albert Einstein was intellectually disabled? How about Nikola Tesla or Elon Musk? Do they consider that the intellectually disabled is good at rocket science?

Perhaps I am misinterpreting. I hope so.

What do you think???

 

[LuxLuca]

This already feels like a wild read to me, very interesting. I'm going to sit down with some tea for this one.

 

[Slim Jim]

IS this the cure? One step closer. The mythical 'cure'. My thoughts: Genetic engineering for human abilities, curing disease, modifying personality, will probably be the norm, in 100 years.

 

[Tom]

Oh no! The Organoids!

 

[Misery]

"lab-grown brains"

 

[Neonatal RRT]

Perhaps I am misinterpreting. I hope so.

The issue is, there are well over 100 known genes associated with autism,...not 1,...and these genes need to be triggered via epigenetic processes. These are not autosomal dominant/recessive genes to my knowledge.

So,...no cure for autism, per se. I wouldn't try to extrapolate some form of "slippery slope" argument that leads to a cure. Nor would I extrapolate some sort of "intent" behind these experiments, either. Almost all laboratory medicine is purely academic,...only a small percentage of these studies make its way into any sort of practical application for humans,...and given the highly complex gene interactions already known within the context of autism,...I would take it as nothing more than an academic exercise at this juncture.

These studies are good to do within the context of understanding how some of these genes are activated. One may also be able to develop genetically manipulated mice for laboratory experimentation,...but it is extremely rare to have these methods carried over to primate and human models.

 

[Unclewolverine]

I was very interested when I saw that article the other day. know that there will probably never be a "cure" and many of us would be against it; but if someone walked up to me and said we want you in this clinical trial that has a slim chance of making your life a tiny bit more normal I would 100% not hesitate. Sign me up!

 

[Ken]

I was very interested when I saw that article the other day. know that there will probably never be a "cure" and many of us would be against it; but if someone walked up to me and said we want you in this clinical trial that has a slim chance of making your life a tiny bit more normal I would 100% not hesitate. Sign me up!

Just a couple of years ago I would have agreed with you. Life for me has been very hard. With an abusive father and living in a very intolerant, backwards town, my autism was hell. That's actually putting it lightly. Most of my life was spent in deep self-loathing. I ended up with profound PTSD's. My life is still really limited by the PTSD's and the autism. Indeed, it would be nice to not have to endure all that pain.

Now, however after much reflection over the past couple of years, I don't think so. I realize that social and emotional experiences all follow the same laws of physics as everything else. I now realize that every experience in my life, from the most minute to the most traumatic, from the happiest to the saddest all adds up to the construction of who I am. If I had an easier time, I would not be the person I am. Also, in that relatively recent reflection, I can see that I now like who I am. Prior to that, I hated myself - deeply and always, but I have discovered that things are rarely as they seem. How we perceive the world, our environment and ourselves are typically falsely perceived or at least with limited resolution. I think most people, regardless of their neurology don't completely understand themselves. I'm sure I don't fully understand myself even now, but my recent revelations has been extremely revealing. Revealing enough to know that the good part of me; the part I really like, would not be that, at least to the extend it is, without all those hard times. Indeed the me that I finally like is not normal. As such, I have no desire to be normal.
Edited to add that all the people that I have admired throughout my life; none of them were/are normal. Not all are autistic; most are not, but none are "normal".

 

[Unclewolverine]

Just a couple of years ago I would have agreed with you. Life for me has been very hard. With an abusive father and living in a very intolerant, backwards town, my autism was hell. That's actually putting it lightly. Most of my life was spent in deep self-loathing. I ended up with profound PTSD's. My life is still really limited by the PTSD's and the autism. Indeed, it would be nice to not have to endure all that pain.

Now, however after much reflection over the past couple of years, I don't think so. I realize that social and emotional experiences all follow the same laws of physics as everything else. I now realize that every experience in my life, from the most minute to the most traumatic, from the happiest to the saddest all adds up to the construction of who I am. If I had an easier time, I would not be the person I am. Also, in that relatively recent reflection, I can see that I now like who I am. Prior to that, I hated myself - deeply and always, but I have discovered that things are rarely as they seem. How we perceive the world, our environment and ourselves are typically falsely perceived or at least with limited resolution. I think most people, regardless of their neurology don't completely understand themselves. I'm sure I don't fully understand myself even now, but my recent revelations has been extremely revealing. Revealing enough to know that the good part of me; the part I really like, would not be that, at least to the extend it is, without all those hard times. Indeed the me that I finally like is not normal. As such, I have no desire to be normal.
Edited to add that all the people that I have admired throughout my life; none of them were/are normal. Not all are autistic; most are not, but none are "normal".

I'm glad you have found self acceptance and balance in your life. I have a much better life than I think I was originally on a trajectory for, mainly thank to my wife and her stubborn refusal to give up on me. However, any amount of achievement in my life has been in spite of being on the spectrum, not because of it. My special interests have caused me to make many bad financial decisions and my poor social skills have lost me better paying positions at jobs even though I excelled at the actual work. Mostly though my marriage is where it causes me the most pain,how hard it for me to give my wife the emotional support an average person does not have trouble with. I believe there are a lot of people here who would jump at the chance for just a little relief.

 

[Tom]

Have seen quite a few discussions touch on the subject of 'What if cures?'. There does not seem to be one dominant opinion among autistics themselves. There are always folks on both sides.

If I am not mistaken the small sample polls I have seen here were roughly 50-50 with half saying they were content/perferred the way they were with autism.

 

[Unclewolverine]

I think you are right, there is also no right or wrong answer either. Many individuals can make very great use of their gifts and have made great contributions to the world that may have never happened otherwise

 

[Darkkin]

My autism is so inextricably linked to my intellect and personality that in the process of seeking to better it I would destroy that which I am, mind and soul. I am very aware of the flaws in my system(s). But I would rather be who I am with them, than a stranger without them.

 

[Tom]

I have difficulty with this subject. The reason is that I think it is pretty darn complicated and requires a long post to address. And I think I tend to forget where I am going half way thru the forest.

I am actually a big fan of medical research. How could I not be. My last post here would have been back in 2016 without it.

But this area is not clear cut. It's not like many cancers where if you don't do anything the patient dies. It's not like some viruses where if you don't do anything a whole lot of people will die and societies damaged.

One big red flag for me is that some research could be used for eugenics, and I believe that approach has it's supporters. In some people's minds that is the 'cure'.

Other research seems to be looking at making changes big and small to the autism condition (not eliminating the autist). They target specific autistic subsets, or symptoms, nibbling at the corners so to speak. And perhaps that has merit. If you could develop a therapy for example that reduces oversensitivity to certain stimuli (ie temperatures, fabrics, noises, etc.) individuals might feel an improved quality of life.

If it was a treatment similar to those used for the common cold, which the patient can stop or start at will, it seems to me a good option to try/have. But autism isn't a virus and a lot of reasearch seems to be going deeper and looking at changes that may not be reversable. Further it is walking into very complicated aspects of personality with many interelated possibilities.

'Ok we fixed the obsessive tendency but now all he does all day is put himself in a planter by the window.'

On top of it all, there is continual push to identify autism sooner and sooner. Which can mean the choices will not be yours, but your parents or the doctor or maybe the neighbors, who knows.

So alright I am lost and will stop talking now . If someone can point me in the right direction out I'd appreciate it.

 

[Katienator]

Why would anyone want to reverse a super unique gift?

 

[Unclewolverine]

Why would anyone want to reverse a super unique gift?

There are many who do not consider it a gift. One can easily tell by the sheer number of posts asking for help, and our extremely high unemployment and suicide rates.

 

[Ken]

I'm glad you have found self acceptance and balance in your life. I have a much better life than I think I was originally on a trajectory for, mainly thank to my wife and her stubborn refusal to give up on me. However, any amount of achievement in my life has been in spite of being on the spectrum, not because of it. My special interests have caused me to make many bad financial decisions and my poor social skills have lost me better paying positions at jobs even though I excelled at the actual work. Mostly though my marriage is where it causes me the most pain,how hard it for me to give my wife the emotional support an average person does not have trouble with. I believe there are a lot of people here who would jump at the chance for just a little relief.

Obviously I was not clear. I never intended to imply that I have found "balance" in my life, nor "self acceptance". Life is not all peachy now any more than it ever was. I still do not like myself very much, but my recent revelations have made me feel less blame for how I am and a few parts (very few), I even find a bit admirable... At least that is an improvement.

I will try again... though I'm less confident now in actually getting my point across, but I'll give it a try anyway.

It has taken me almost 70 years to figure this out. It doesn't make my life any easier, but the realization of how I am constructed provides a few bits of closure.

My point: I now realize that my life; physically, neurologically, mentally, personality - the entire construct that makes me me is a House of Cards. Actually, I believe the entire universe is a House of Cards. (Removing any card, at best changes the entire assembly (me, the universe or anything in between), at worst, crashes the whole thing.) The person I am right now is composed of all my life experiences. Yes, it would be very nice to have a good life without the constant trauma, but all those trauma's are a part of my construction. All the trauma has shaped me for good or bad. But, I can't get rid of it or un-experience it because it is a part of my being. If I were to take a drug or some procedure to remove or even reduce any of the traumas, difficulties and unpleasant experiences, then that would be removing a part of me. Sounds inviting to remove those parts, until I think about the other parts that would also go away with them because of the interconnections.

For example: I have a major PTSD that is nightmare level terror that is triggered and sometimes just pops into my mind. The horror is way beyond anything Stephen King could ever imagine. Yes, it would be wonderful to get rid of that. But then, I consider what is connected to that PTSD - what the PTSD is made of. The PTSD started in my early, single digit years upon witnessing my best friend brutally murdered right before my eyes. The construct of that PTSD is empathy and love I had for my friend. Knowing what that murder must have been like for them is beyond my capacity. If my empathy and love for them were removed, the PTSD would be removed. I do not see any way the PTSD could be removed without taking my empathy and love with it. Regardless how horrible the PTSD is, loosing my empathy and love would be worse.

That's just one example. So, yes, life is hard - really hard, but the hard experiences is a part of what has made me. The trauma's are forces that build resolve and strength.

Looking throughout human history, people who have made incredible accomplishments are all people who endured incredible difficulties. Actually, not just humans.