This message was self-deleted by its author

[MissMillie]

This message was self-deleted by its author (MissMillie) on Thu Feb 16, 2023, 07:25 PM. When the original post in a discussion thread is self-deleted, the entire discussion thread is automatically locked so new replies cannot be posted.

[ashredux]

1. Your forecast on the price of the drug was the first thing I thought of when I saw it was $3

[Celerity]

2. it is available in generic form under many brand names worldwide

[ratchiweenie]

3. Agreed but Lamotrigine, is already the generic of Lamictal. This would be such a huge breakthrough.

I know a number of parents with autistic children and it is heartbreaking. If it even partly helps it would be a blessing.

[ananda]

46. My sister's child is on the spectrum.

Maybe this would help them too.

[ratchiweenie]

57. Wouldn't that be wonderful. It is such a difficult disorder and takes so many forms. My son is

bi-polar, now 45, and it's been very hard but I do believe it's more difficult for my friend who has a child who still is not fully potty trained and doesn't really talk. Gosh I admire those parents. I wish them the best.

[Takket]

12. Bingo!

[spinbaby]

4. How does one tell if a mouse is autistic?

In all seriousness, I have an autistic grandson who has petit mal seizures and is taking medication, but is no less autistic for it. I’m extremely skeptical of any "breakthroughs" demonstrated only on mice.

[MissMillie]

9. It would appear that these scientists created the symptoms of autism in mice

To test impact of the protein on autism symptoms, researchers at HITBR genetically “switched off” MYT1L in mice and human nerve cells. They found that this led to electrophysiological hyperactivation in the mouse and human neurons impairing nerve function.

The mice lacking MYT1L suffered from brain abnormalities and showed several behavioral changes typical to ASD, such as social deficits or hyperactivity.

I don't know enough about autism research to say for sure that a lack of MYT1L is the one and only cause of autism or it's symptoms.

I imagine peer review is necessary for this to be considered a conclusive study. I do not know whether or not that has been done yet.

[SheltieLover]

10. Pls take a look at these links in relation to your grandson's autism

https://integratedlistening.com/polyvagal-theory/porges/

Filtered sound therapy, based upon Dr. Steven Porges' Filtered Sound Therapy. There is a free ebook at this site & a video you can watch.

When I personally saw this therapy in action, it was a research protocol at U of I, Chicago. The therapy ran 5 days for one hour each & consisted of filtered sound, music in one ear & a man reading a story in the other ear.

Exemplary!!!!!

Also Tomaitis Therapy, another filtered sound therapy. This therapy is often offered by OT professionals, although certification in France is required so it might be limited depending upon your area.

And neurotherapy. I've seen quite dramatic outcomes with this as well. Kids who spend a few days per week (30 min / session) over the summer engaging in brain wave training who no longer needed a licensed teacher as a 1 on 1 aid in school, etc.

I have seen all 3 work miracles!

Not sure about the mice, but I prefer the above types of therapies which go straight to the cause of the problem.

Best of luck to you!

[The Jungle 1]

18. My extensive research on google.

Apparently mice do exhibit symptoms of autism. I would agree the leap from mice to humans is big.
The only thing I will say is if the medication does work what a big deal that would be

[meadowlander]

28. One of the symptoms is repetitive behaviours

so I imagine that would be observable in mice. Also potentially over- or under-sensitivity to sensory stimuli.

[The Jungle 1]

48. Yes and shunning contact with others is observable.

[intrepidity]

26. Probably if you put it into a group of mice,

it may sit in a corner or something. Mice are generally sociable and curious about their surroundings. Or, it may explore the surroundings but avoid contact with the other mice. Probably relatively easy to visually observe.

Just a guess.

[The Jungle 1]

49. I agree

My only question is and the scientists probably have a good answer. How do you take the behavior of mice and say it is the same as autism in humans.

[mwooldri]

5. I hope it doesn't go to $300 a pill!

It's not just for epileptics. People with bipolar disorder are prescribed it. Including me. To say that lamotrigine helps me lead a normal life is putting it mildly.

[fescuerescue]

53. It's already generic and the patent has expired

So no it won't.

What is likely however, is that drug companies will develop and improved version of this drug in the next few years and that new one will be expensive.

Since any drug company can still make the original, it'll remain on the market, but doctors would likely prefer to prescribe the "new and improved" one if it actually is improved.

[WhiskeyGrinder]

6. Which symptoms?

[MissMillie]

7. two mentioned in the article are

hyperactivity and social deficits.

[WhiskeyGrinder]

13. What's a social deficit and why does it need to be turned off?

[MissMillie]

17. My comment was about the prediction of the price of the drug

Cut me some slack will ya? lol

If you have questions about Autism Spectrum Disorder and WHY it's a disorder, and why people are treated for it, go do some research.

[fescuerescue]

55. Asking questions is research

[MissMillie]

58. Not when you're asking me. lol

I have no information on that topic.

I have, however, noticed that drug companies often find a way to charge people more money whenever it turns out that their products can be used for new things.

[Disaffected]

25. So it's social deficitism then?

[meadowlander]

29. Hyperactivity isn't a symptom of autism.

[MissMillie]

38. I didn't write the article, or publish the study

I was making a comment about how drug companies will probably raise the price of the drug.

[meadowlander]

41. But it goes to the credibility of the article if they say hyperactivity is a symptom of autism

when it isn't.

[MissMillie]

42. MY comment was on drug prices

I'll leave it to you to determine if the scientists are lying or the authors of the article are lying.

[meadowlander]

44. You've posted a link to a tabloid article with misinformation about autism symptoms.

All I'm doing is pointing out that it is misinformation. As this entire thread demonstrates, there is enough misinformation floating out there already about autism without perpetuating more of it.

I don't think you need to be so defensive about people seeking clarification on the topic that you've introduced. What "symptoms" exactly is this drug supposed to treat is a relevant question and so are questions about the ethics around "curing" autism given the very dark history of attempts to do so.

For example, this boy who died from chelation therapy: https://www.nbcnews.com/id/wbna9074208

Or all the kids who died from restraint therapy: https://abcnews.go.com/Blotter/death-school-parents-protest-dangerous-discipline-autistic-disabled/story?id=17702216

Or all the kids who were tortured by being trained not to stim or have vocal tics: https://whyy.org/segments/how-a-therapy-once-seen-as-a-victory-for-autistic-kids-has-come-under-fire-as-abuse/

This is a discussion board. If you want to post an article about a pill for "switching off" autism, then by all means let's discuss it. The problem is you don't seem very interested in doing that or in listening to the perspectives of actual autistic people about something that could have significant implications for their lives.

[MissMillie]

45. the topic I introduced, in case you missed it.

"Well, we all know that as soon as this $3 pill is approved for a new use, its price will soar to $300/pill (or more)."



I used the article to show that there is research done to see if the pill can be used to treat other things, AND then I stipulated that if the pill gets used for other things, Big Pharma will jack the price up.

If I had wanted to talk about the science/research/treatment of ASD, I would have made a comment about ASD.

I made a comment about Big Pharma.

[meadowlander]

47. You don't get to cherry pick what your thread is "about" and shut down any other discussion.

When the title of the thread is "Scientists 'switch off' autism symptoms using $3 epilepsy drug" any reasonable person would expect exactly the discussion you are getting here. And I think you'll note that the majority of responses are not on your selected topic but on the obvious issues raised by the article you posted and your headline.

The question you should be asking yourself is why you are so invested in confining the discussion to ignore any of the ethical implications of the treatment or any of the specifics of what that treatment entails. Nobody is attacking you specifically. They are asking reasonable questions about the topic of the article you posted and the rigor of the science and accuracy of the journalism sitting behind it. If you don't want to discuss those things, don't discuss them but you don't need to act put out by very reasonable questions and clarifications on a topic you raised for discussion on a discussion board.

[MissMillie]

50. I ABSOLUTELY get to "cherry pick" what *I* will discuss in any thread

especially a thread that *I* started.

When people are asking ME questions about something I didn't bring up, I am entitled to dismiss them.

First my thread about Big Pharma gets hijacked by what is/isn't ASD and what should or shouldn't be the treatment.

And now it's being hijacked by someone who feels the need to scold ME for thinking maybe--just maybe--I wanted to talk about drug prices (when that's EXACTLY what I've said at least 4, 5,... 10 times INCLUDING THE ORIGINAL POST).

[fescuerescue]

54. You can choose what you reply to

But people can discuss whatever they choose.

[MissMillie]

56. Yes, and I haven't suggested that they can't

I have merely said, when *I* am asked about the science/the study/the treatments that I don't know about those things... that I wanted to talk about drug prices.

You don't see me interrupting the discussions by other people in this thread about science/study/treatment.

Why has my thread about drug prices turned into "let's gang up on MissMillie for not joining us when we hijack her thread?"

[meadowlander]

59. What do you want to "discuss" about drug prices?

Isn't "more demand will increase prices" Economics 101? Are you expecting someone to disagree with that?

You posted a thread called "Scientists 'switch off' autism".

The natural discussion points arising from that are "what does 'switching off" autism mean" and "what are the ethical implication of doing that" not "golly I wonder what will happen to the price of the drug ten years down the line when this study of something that may or may not do something to rats may or may not be approved for human use. Will they go up? I don't know".

Nobody is scolding you. I am genuinely asking you to take a breath and an honest look at why you feel the need to try to confine this discussion to talking about drug prices when that means trying to shut autistic people out of a discussion about what a proposed drug for autism might mean for them.

I'd also note that comments downthread about how great this will be as a potential miracle cure are similarly off-topic to your proposed discussion point on drug prices but you are not accusing any of those people of threadjacking.

Also not every question or statement posted on this thread is someone asking you specifically. When you respond to a general question like "What symptoms are we talking about?" with "I'm not a doctor" or "I didn't write the article" like it's not a legitimate question to ask, you are trying to shut down a legitimate line of discussion. You have the option to simply not respond to that question if you don't know and see if anyone else who knows more about it wants to respond. But instead you're acting like any attempt to clarify what the article is about or what it might mean for people or to fact check misinformation in it is a personal attack on you. It's not.

[MissMillie]

60. I did not try to confine anyone else's discussion.

In fact, at one point when someone mentioned misdiagnosis, I did talk about that a bit (calling it scary).

And you're STILL scolding me.

[LiberalArkie]

8. This scares the crap out of me as a 75 year old Aspie man.

It would radically change the personality of a person. As a little head-banging child, I could see it really being worth it. But to take a teenager who is just anti-social and spends time on books and learning things, and make him a NT that now is only interested in cars, dating, dating, dating and all the social things that are normal. That would scare me.

[MissMillie]

11. That does sound scary.

It would seem to me that there needs to be (if there already isn't) a way of differentiating between someone having autism spectrum disorder from someone who is simply introverted.

Not only am I not a doctor, but I have very little experience w/ any of this.

I guess my post wasn't so much about the science as it was to suggest that if the drug companies can find a way to get more money out of people, they will.

[ratchiweenie]

16. I think in many instances it's quite easy to tell. I know one little girl who is now 7 who barely

talks. It's not that she can't talk. She doesn't talk. She's very bright but has a hard time controling her emotions. Most of the time she is very sweet but sometimes she just totally melts down. She is still wearing diapers. Most of the time she doesn't need them but sometimes she forgets.

If Lamictal can help her, that would be amazing for her and her parents. I hope that's the type of ASD they would aim for first.

[meadowlander]

30. People on the spectrum have different support needs but they are all still autistic.

Someone with Aspergers is not "simply introverted".

The problem with the obsession with finding a "cure" for autism is that it is not a disease. It is a neurological difference. You can medicate some of the more problematic symptoms (ideally with the consent of the person involved) but you can't make someone not autistic with a pill.

I'm autistic. There is no part of me that is not autistic. You can't "switch it off" and I wouldn't want to if I could.

[MissMillie]

39. I don't argue that it is

My assumption is that scientists and doctors do have methods of differentiating between the two. I think the other poster was merely presenting a scenario where introverts are misdiagnosed.

[meadowlander]

40. No, they're talking about a scenario where people with Aspergers (i.e. autistic people)

are pressured to medicate themselves to present as less autistic to make other people comfortable.

Is the goal to provide therapies that autistic people themselves welcome to make their lives easier or therapies that make everyone else's lives easier by making the autistic person less "weird" and socially awkward? Because a lot of autistic adults are proud of their differences and a lot of autistic teens and kids who are still trying to figure things out don't need a magic pill that makes them "not autistic". They need a society that embraces their differences and see the strengths inherent in neurodiversity.

There is a way to diagnose autism. It's a battery of tests and interviews with a psychologist. Autism isn't extreme introversion. It's a spectrum of neurological differences related to social functioning, executive functioning, repetitive and/or restrictive behaviour and sensory differences.

And many of those differences are actually strengths if society chose to view them as such. For example, a preference for honest and straight-forward communication, logic and order, the ability to hyperfocus and to recognise patterns that other people might not see, happiness doing work that other people might find tedious, responsibility and integrity, persistence etc.

Why medicate those traits away when the only problem is neurotypical people feeling uncomfortable around someone who they perceive as blunt, aloof and unwilling to compromise?

[SheltieLover]

14. John Elder Robison had reservations about his transcranial magnetic stim as well.

I prefer the filtered sound approach:

https://integratedlistening.com/polyvagal-theory/porges/

Neurotherapy, & Tomatis Therapy.

But, as 'm sure you realize, what works for one might not work for all. 😉

Have you read Robison's books?

[Oneironaut]

20. I'm also an Aspie. I don't want to be "cured."

I recognize that this is probably catered more towards kids with behavior problems from autism. However, I don’t want a cure pushed on me when my only deficits are social difficulties. I love my hyper-fixations. I feel like “curing” my autism would be obliterating what makes me, me.

[LiberalArkie]

21. Yea, being aspie is what makes us - us. A total cure would change who we are.

But if it could have been done when I was a little tike, banging my head into the walls, looking back it would have really been a life changing event. My parents were told(back in the 50's) to either just take care of me or lock me up in the state hospital. The faith healing and exorcisms that my parents had done did not work on Aspergers for some reason.

[edisdead]

27. So if and when it becomes a treatment, don't partake?

I find it interesting people are saying they don’t want it forced on them. By who?

[meadowlander]

31. The same people who feel qualified to tell trans kids that they can't make their own medical

decisions about transitioning until they are 18.

You just know there are parents champing at the bit to "cure" their kids they are secretly deeply disappointed in.

Schools are also likely to put pressure on parents to medicate their kids to make them more manageable in the same way that currently happens with ADHD.

[edisdead]

32. Meh, big difference there

Between saying you can’t take this drug and you MUST take this drug. If drugs become mandated I think shit would hit the fan in a big way.

[meadowlander]

33. For children who do not legally have the right to make their own medical decisions, it is a must.

And the neurotypical majority who cannot understand why anyone would want to be autistic, will not intervene to protect kids or adults with more significant support needs who choose to be their authentic autistic selves instead of a medicated zombie.

I don't think the shit will hit the fan. It doesn't for schizophrenic people who refuse medication and are declared incompetent to make their own medical decisions by their families.

[edisdead]

34. Ok but that has nothing to do with THIS drug.

That is the case with any medication.

I am assuming you are an adult right? So for you, you shouldn’t partake in it IF it actually becomes a thing for humans.

[meadowlander]

35. As an ethical adult, I can have an interest in a potential injustice which doesn't directly affect

me.

And the opportunities are ripe for abuse. If you don't see it, I think you need to educate yourself on the dark history of the psychiatric profession.

And it does affect me if the societal expectation becomes that I must medicate myself to behave acceptably rather than what autism and disability advocates have been pushing for for 50 years - recognition that autism is a normal variation of human experience and that the rest of the world needs to make space for authentically autistic adults instead of expecting them to make all the changes for society's comfort.

[edisdead]

36. I do think that we need change in

I do think that we need change in how we deal with those that are supposedly unable to make decisions on their own. Paula curtain stuff.

[SheltieLover]

15. Wow! Great news, Miss Millie!

Ty for sharing!

[MLAA]

19. So true, Miss Millie, so true. $30 it will be. So wrong.

[NNadir]

22. It is very, very, very, very difficult to control the use of a drug for a new application.

People may, with good reason, choose a different route of administration, in what would be, in effect, a 505(b)2 application, but physicians can and do write scrips for off label reasons.

In the pharmaceutical industry we save people's lives; we make lives better; we cure diseases.

Our industry has known abuses to be sure, but the rote hatred for what we do, the vast efforts that scientists make, the long hours, the frustrations, failures and disappointments is unwarranted.

[Fiendish Thingy]

23. Don't get too excited...yet

1) this study is only in mice, not humans
2) the headline is from the NY Post

[Sympthsical]

52. Yeah, if I had a nickel for every promising mice treatment

That doesn't go anywhere with humans, I'd be Pfizer.

It's interesting to note. But it's step 17 out of 5,477. Hit me up around 5,000.

[Chainfire]

24. If it is successful in treating the disease in humans, then the price will go from

$3.00 to $300.00 per dose. To pay for the research and development, of course.

[summer_in_TX]

37. That would be exciting if it bears up in humans!

As a special education teacher, I dealt with students on the spectrum. Some could be accommodated in the school fairly easily.

One boy I had as a third and fourth grader (great kid), had a very difficult time in school in K-2. His parents could afford specialized help and he went to a neurologist several mornings a week before coming to school. By third grade, meltdowns were very rare and he had developed some social skills.

My second cousin's wife is now homeschooling their very autistic son who exhibits many typical behaviors like flapping, "stimming," and non-engagement with others. He did not adjust to a school environment, I feel sure, from observing him. Their income and social life is constrained, even within the extended family because "Zack" doesn't participate in play or other activities. Tragically the grandfather (my first cousin once removed) committed suicide last September and there were hints that the grandson's autism and fears of being burdened or being a burden might have been a factor (according to an ex).

One of my grandsons is probably on the spectrum, at the Asperger's end. Very high functioning in many areas and relates well to adults, but big deficits too. He is gifted in mechanical and electrical areas.

I've been meaning to explore the possible connection with Tylenol. There's got to be environmental factors for the huge percentage of increase.

While attention deficit hyper-activity disorder is not specifically a characteristic of folks on the spectrum, in my experience of working with dyslexic, learning disabled, and ASD-spectrum students a higher percentage showed ADHD behaviors than the regular population of students did. I'd say 25-33 percent had attention issues. In the case of the ASD kids, many of them had a lot going on all the time.

I may be off-base but in observing them I thought in general many had random electrical activity occurring in their brains and bodies, where other neurologically different kids seemed to have more systematic, less random activity.

[meadowlander]

43. The increase in diagnoses relates to better understanding and recognition of the symptoms

and, in particular, how they present in girls and women who have been chronically underdiagnosed for decades.

It is primarily genetic with some potential environmental triggers but it has nothing to do with vaccines or Tylenol. I'm autistic because both of my parents were autistic (and my brother, two uncles, two aunts, four cousins, etc.) not because my Mom took too many NSAIDs when she was pregnant.

Also the "spectrum" relates to the range of symptoms not the degree of impact. There isn't an "Asperger's end" or a "high functioning end". Functioning is situational and depends on the range of symptoms people have and how they are impacted. Generally you would discuss the level of support needs a person has rather than how "high functioning" they are. I.e. "he's autistic with minimal/moderate/significant support needs" rather than "he has high functioning autism" and "she is very autistic".

For example, I have very bad sensory issues in some situations but am generally verbal and can live independently and have a full time job. But if you put me in a nightclub, I would lose the ability to speak within five minutes and would become distressed and either seek the flee or become frozen in a corner. Meanwhile someone else on the spectrum with more language difficulties but fewer sensory issues would be happy to party in the nightclub all night but wouldn't be able to hold an office job because they would struggle with following instructions. So which of us is "high functioning"? It depends on what you're asking us to do.

I'm not "less autistic" than someone who is non-verbal, and that conceptualisation makes it more difficult for autistic people who need less help but do still need support in some areas to access it. The expectation becomes "you're not that autistic, so you could pass as not at all autistic if you really tried to, and therefore you should" notwithstanding the serious mental and physical health impacts of autistic people masking their differences.

[fescuerescue]

51. Fortunately it's already generic so it should stay $3

Since the patent has already expired.

[iemanja]

61. I take Lamotrigine for depression

It hasn't made me more social. Seems like they are giving all kinds of drugs for off label uses.