11 ms·

CRISPR therapy may reverse autism gene mutation effects in mice: study

124 points by daegloe 7y ago

batiste 7y ago
So, this is a reverse vaccin?
shaggyfrog 7y ago
(in mice)
- not_a_cop75 7y ago
  = in early trials
pavel_lishin 7y ago
I'm sure there are plenty of people who identify as on the spectrum here on HN; I'd like to ask y'all: If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this? What are the ethics applications of using a treatment like this on people who are so deeply impacted by autism that they can't meaningfully give consent?
- rpmisms 7y ago
  Absolutely. Being on the spectrum is socially miserable enough that I'd gladly trade an unpleasant chunk of my personality for it.
- SolaceQuantum 7y ago
  "If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this?" This is sort of an unrealistic hypothetical that isn't really informative, IMO, for a few reasons mostly attributed to the spectrum of how autism manifests and also that I doubt there is any such thing as "without any side effects". I think what would be more informative is to ask- if they would be willing to undertake a treatment course for their autism what side effects would they be willing to bear and for how minimal of symptom relief would they be willing to bear for? EG. Let's say the Cripsr therapy works only on resolving sensory information issues doe to fixing the neurons capacity to process sensory input. In consequence, however, is that the person has a higher likelihood for seizures and, later on, parkinson's. Or, the Crispr therapy works only on resolving neurological pathway issues when it comes to emotional intelligence- the patient will still have to undergo intense occupational therapy in order to learn social skills- worth it? I don't know. I don't have autism. But I think these questions will provide much more insight.
  - ceejayoz 7y ago
    I don't think that's fair. The hypothetical with no side effects or safety issues means we have to consider the ethical side of "should we 'cure' autism". We have to answer that before any discussion of "what level of side effects are acceptable". See, for example, the Deaf community's feelings on things like cochlear implants.
    - scarby2 7y ago
      I'm not sure the deaf community's views on cochlear implants are entirely relevant here. There is no 'autistic culture' whereas there is very definitely deaf culture. Also we're not necessarily talking about a straightforward disability. If any of us were offered the ability to gan an extra useful sense then we'd probably take it... If we talk about something that profoundly changes our personality then maybe we'd be a little more hesitant.
      - ceejayoz 7y ago
        > There is no 'autistic culture' whereas there is very definitely deaf culture. There absolutely is. https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Controversies_in_autism#Pathology_paradigm https://en.wikipedia.org/wiki/Controversies_in_autism#Pathol...
    - big_chungus 7y ago
      I've never understood why some deaf people feel so strongly about it. The fact that deafness is part of their identity doesn't mean they ought to go around telling others they shouldn't try to hear, especially not so vehemently. I'd consider it roughly equivalent to the really obnoxious fire-and-brimstone evangelicals that yell that you're going to hell if you don't convert. Why do people care so much what others do with their lives?
- hirundo 7y ago
  Also if you're on the spectrum, if there was a drug that could make someone autistic temporarily, would you recommend it to others?
  - thanatropism 7y ago
    Not autistic, but bipolar: you can achieve a reasonable simulation of euphoric mania, but that's not quite the same as a lifetime of dealing with that.
    - krageon 7y ago
      It is not the same, but it is equally amazing. Of course euphoric mania has the significant downside of being measurably harmful to your brain in the long term and is thus perhaps not a good comparison.
  - pavel_lishin 7y ago
    I wish we lived in Banks' Culture, where this sort of thing was possible. I'd love to see what it's like to be on the spectrum, or what it's like to be gay, or what it's like to have a body of a different gender, or what it's like to be a bat.
  - ActorNightly 7y ago
    I would. I think that being able to experience "emotion independence" in the sense that you can act on things that make sense rather than those that have the best emotional outcome can be good for people.
  - tick_tock_tick 7y ago
    adderall?
- gliese1337 7y ago
  At the moment, it doesn't say much on the tin. So, no. It may repair typical neuron function, but how does that translate into functional changes in personality and social interaction? Based solely on that article, it looks like we don't really know that even for mice, let alone humans. I, for one, don't care what any treatment might do at the level of neurons--what I would care about is what the expected therapeutic outcomes are, regardless of the biochemical mechanism, and that data is completely missing.
- WhyNotThough 7y ago
  Given that it's a spectrum where on the spectrum would it end up? Neurotypical choleric extraversion or something?
  - fsloth 7y ago
    Not all introverts are ‘on the spectrum’.
  - deleted 7y ago
    [deleted]
- drbojingle 7y ago
  If I didn't like the result could I go back?
  - deleted 7y ago
    [deleted]
- fsloth 7y ago
  I’m soon 40. I like to think I’ve made piece with the world - I pretty much grok most of the idiosyncrasies between myself and the society around me. Statistically I’m way beyond the age when the most important friendships are formed. I’d like to be a little less anxious, but that’s about it. It’s not enough to sign up for experimental neurological treatment. So no, I would not apply this to myself.
- yitchelle 7y ago
  I have a loving wife and two great kids, good job and a relatively conformtable life. My peace is made, so no, I wouldn't take it.
- deleted 7y ago
  [deleted]
- kulahan 7y ago
  If they're that deeply affected by autism, they almost certainly have a caregiver at that point. I imagine that's the solution - whoever has power of attorney for medical decisions would make the call for them. From there, it's simply a personal decision for the caregiver. If they've got it light enough that they can handle life in the real world (i.e. can enter contracts for renting an apartment, getting a car loan, etc.), then they can give meaningful consent for themselves.
- buboard 7y ago
  I m sure psychiatry has already answers to the last question And if i m detectably on the spectrum- yes i would! Not because i hate myself, but to experience the other side. I m kinda surprised that people say no - do they also say no to all recreational drugs? This crispring would be reversible anyway
- r00fus 7y ago
  > If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this? I think the real question is, if I as a hypothetical parent wanted to help out my newly-diagnosed child as being on the spectrum, I & my spouse would most definitely strongly consider it. The ethics are an interesting point, but kids don't get to choose parents or their skin color. If I as a parent/caretaker have authority to make this decision, it should be my decision to make (with due consideration of the impact it might cause).
  - gugagore 7y ago
    I agree that's the real question! And its answer is informed by the original question. I don't and can't know what the right answer is. But I hope that if you are faced with this decision or any similar decision, you try to get perspectives of the adults who have lived with whatever diagnosis is at play, like the commentors here. Medical professionals are familiar with only a slice of these things. And the media and the "common" understanding also has only limited or distorted information.
- Porthos9K 7y ago
  I'm no more interested in being made neurotypical than I am in being made right-handed, cisgender, heterosexual, or Christian. A society that regards people who don't fit in as "defective" is itself defective, and ought to be burned to the ground.
  - chr1 7y ago
    Autism does not only describe people "who don't fit", but also people who would die without someone else caring for them. A society that doesn't regard such people as defective, and doesn't try to help them (when they agree), is simply lying to itself.
    - gugagore 7y ago
      I think you lack compassion in your wording. We have evolved as social creatures, and we care for each other. We depend on each other in millions of ways, in millions of varieties. I would bet you too would die, or have died, without some care at key points in your life. It takes a village to raise a child. I argue it takes one to keep a human alive and healthy too. One piece of content in favor of my point: https://youtu.be/n3Xv_g3g-mA https://youtu.be/n3Xv_g3g-mA There's no need for people to be able to survive without care. And yes my society values individualism, but we should be able to critique it, and ask where that emerges from.
      - krageon 7y ago
        > There's no need for people to be able to survive without care. There is no need, but there should be the option. If we can provide that option to people that want it we should be allowed to. Just because someone feels that it infringes on their core identity does not mean someone else should not be treated for something they feel is a defect. Saying that this needs to be possible is not a lack of compassion, it is the most compassionate choice.
        Porthos9K 7y ago
        > Saying that this needs to be possible is not a lack of compassion, it is the most compassionate choice. Pardon my cynicism, but I have no faith in the "compassion" of "normal people". Not when I've spent my whole life being told that I'm defective and need to be fixed. You might not want to force people into treatment, but my experience suggests that you're part of a small, sane minority.
- CM30 7y ago
  Hmm, I guess it'd depend on how much my personality, skills and other traits are linked to being on the autistic spectrum. That's the tricky part about these possibilities, we don't really know what someone who is on the spectrum (or for that matter, who has any other type of neurodiversity/psychological condition) would be like without having it. Does someone's interest in say, programming link to their autism/aspergers? Or their aptitude for it in general? There's always just that ambiguity, and that makes it difficult to decide even without obvious side effects. There are a lot of issues caused by being on the spectrum that I would love to have fixed by some miracle treatment like this, such as difficulties socialising or coping with crowds or strangers, or sensory overload or what not. But I would want certain other aspects of my personality to just vanish at the same time.
- callesgg 7y ago
  Even if you changed the gene they would still have all the traits that society calls autism. The traits that society calls autism are development traits that develop in the psyche over long periods of time. The actual gene mentioned here does not so to say directly cause autism, opposed to for example a bridge pillar that causes a bridge to float above the ground. There are many steps (under years of personal development) in between the cause (in this case a gene) and the traits that is the diagnosis.
- pchristensen 7y ago
  I have two children diagnosed. I'm confident that if I had grown up in the 2000s instead of the 1980s, I would also have been diagnosed. But none of us are debilitated by it, and if you took away the limiting factors, you'd remove much of our personality and interests as well. There's nothing about them or me that I'd trade our identity to get rid of. But I'm not facing the challenges that people with severe autism have, so grain of salt.
  - Obi_Juan_Kenobi 7y ago
    I think you're seriously underselling the challenges of even 'high functioning' autism/ASD-1/aspergers. In this group, the suicide rate is nine times higher than the general population, contributing to a life expectancy 12 years lower. https://www.ncbi.nlm.nih.gov/pubmed/26541693 https://www.ncbi.nlm.nih.gov/pubmed/26541693 As for identifying with the disorder, this is not an uncommon response, but I think it's fraught. It seems a coping mechanism more than a reasoned reflection of how the condition shaped one's life. Understandable, certainly, but also potentially quite misguided.
    - IIAOPSW 7y ago
      The suicide rate among LGBTQ is also some outrageous multiple higher than average and in the not to distant past that was also a bona fide psychological diagnosis. You see the intrinsic problem with codifying anything out of the ordinary as a "disorder"?
      - giggles_giggles 7y ago
        That's a slippery argument. At the low functioning end of the autism spectrum are behaviors like tantrums, compulsive violence towards self and others, and behaviors like fecal smearing. We also need to be careful not to ignore clearly disordered behavior. That is not compassionate towards the afflicted, either. If a disorder can't be labeled a disorder, the patient cannot be treated.
        7y ago
- ActorNightly 7y ago
  I wouldn't. Me being on the spectrum is what gives me the technical advantage over a lot of my peers, and is the reason I can have a stable, high paying job and do the things that I want to do. And it is not like I am unhappy or struggling from the effects of being on the spectrum, like connecting with people. Yes, there are definite downsides, but at the same time, Id argue that there are downsides to being too emotional dependent to the point where someone fails to act on logic and reason to a certain extent. In both cases, me and the other person find a way to be happy within the constraints of our lives, accepting the drawbacks as a necessity.
  - Cybernetic 7y ago
    Yes, I completely agree. The 'abilities' I have due to Autism have been advantageous for me creatively and professionally, in spite of social struggles. Those abilities aside, people with ASD tend to have high levels of focus and deep knowledge (on one or several subjects), those traits are as important to identity as social norms. I wonder who I would be post treatment if this were available. Would I remember abilities I had that no longer exist? I was diagnosed late in life, at 40. I am comfortable with who I am and if there were any chance I'd lose myself to 'treatment' it would be a hard no for me.
- deleted 7y ago
  [deleted]
- dooglius 7y ago
  If it actually works in humans, and I have the gene in question (both of which I doubt are true in actuality), then unequivocally yes, even if the side effects were extremely severe. > What are the ethics applications of using a treatment like this on people who are so deeply impacted by autism that they can't meaningfully give consent? What are the ethics of fixing broken bones in infants who can't meaningfully give consent?
- Cybernetic 7y ago
  I posted this response before I saw your thread (reposting here for context). I have Autism. I don't know how I feel about this. It's exciting, but would a reversal remove advantageous traits of Autism too? There is little information about adults with Autism compared to what's available about adolescents. In my experience much of the info is about living with disabilities associated with Autism. I haven't found any research that focuses on the beneficial aspects of Autism - anecdotally I feel there are abilities of mind across the Autism spectrum that are especially useful, and for some, seemingly super-human. While one may gain some social skills, how much of their unique abilities would be lost to this process?
- pgt 7y ago
  In a heartbeat.
- GordonS 7y ago
  Single data point here. As someone else already replied, if I'd grown up in the 2000's instead of then 80's, I'd probably have a diagnosis of autism, to some degree at least. I believe I'm somewhere on the spectrum. I'm an introvert, I'm often quite awkward socially, and frequently just don't "get" other people's way of thought that seem to be obvious to everyone else; if it's not "logical" to me, I just don't understand it. My wife has said I might be autistic numerous times, and family members have suggested it a few times too. I can only assume this is due to a genetic mutation. If a treatment was available to change this, I would gladly take it - I loathe feeling so alien and alone.
  - loriverkutya 7y ago
    I would probably go and get an assessment in your place, it helped me a lot to understand why I feel alien and alone in some situations. It would also gave me access to resources which made my life easier and my relationships more harmonic. (Also, it's anecdotal, but wifes seems to be very good pinpointing autism)
- sidlls 7y ago
  A person with that severity of autism will never be able to consent anyway; parents or guardians should not feel an ethical concern over consenting on their behalf for something like this. On the other end of the spectrum you have people like my child: he's got social deficits and grapples with emotions, but is in public school and (with ~$25k in therapy a year) is able to function. Under no circumstances should it be anybody's decision but his whether to have such a treatment, in my opinion.
- somebodythere 7y ago
  My "high-functioning" autism confers several difficulties and a few unique advantages. I've developed enough coping methods to smooth over the former to a point that I don't feel a cure would be on-net beneficial to me. However, I have a feeling that the fact I can't choose whether I have autism is the reason why neurotypicals find what I don't/can't mask interesting or endearing rather than annoying. If there was a cure, suddenly I would have a choice, and I think people would have a lot less patience for my symptoms. "Why not just become normal?" I would feel pressured to take the cure.
- hoseja 7y ago
  This feels to me like a path to true Idiocracy, functioning autists are vital to technological and scientific progress.
- burpsnard 7y ago
  For me, no way. On balance i feel more enabled than disabled. You can argue my perspective is skewed, and i yours. I wish there was some way to give aut insight to neurotypicals, other than reading PKD on LSD. For every 'cure' i hear of, i wonder can it be used to mane an NT autistic ? Also: i suspect a lot of debilitating brain diseases and injuries get misdiagnosed as 'autism' as the criteria are very blunt.
Erwin 7y ago
Elizabeth Moon (fantasy and mil sci fi writer and a former marine) happened to write a book about almost exactly this modification being available: https://www.amazon.com/Speed-Dark-Novel-Elizabeth-Moon-ebook/dp/B004BDOJN6 https://www.amazon.com/Speed-Dark-Novel-Elizabeth-Moon-ebook... -- I enjoyed that more than the canonical "Flowers for Algernon"
- Porthos9K 7y ago
  Oddly enough, Amazon claims the book isn't available.
hoopism 7y ago
My daughter was diagnosed with Autism at 16 months. Just this year (she is 6 now) we found a genetic cause (SCN2A, the one mentioned here). We have invested a ton of time and energy into therapies and she is doing very well... I wonder how receiving the diagnosis in reverse would have affected us mentally. I have met others who got genetic results and pushed more into finding a cure. I always felt like any potential "cure" wouldn't be in her lifetime... now I wonder.
- deleted 7y ago
  [deleted]
- asdfx 7y ago
  What tests are done to determine genetic cause? This would be really helpful, appreciate your info
  - hoopism 7y ago
    We did a genetic test for small number of well known genetic disabilities when she was younger that did not yield a result. Our neurologist then recommended a "whole exome sequencing" a few years later. This is where we found a result. Insurance is often reluctant to cover this but it's SOMEWHAT affordable (want to say 2-3k with some hospital magic discounts). I can't say it has affected our course of treatment but we were concerned about what other health related issues may be associated with the diagnosis. And it is somewhat promising that a treatment may someday be available. I would highly recommend pushing for testing. I am told they continually with run your results against know mutations as they find more. So even if you don't get a result today you may someday.
    - asdfx 7y ago
      Thank you for the elaborate response, this is helpful
- Medicalidiot 7y ago
  CRISPR could ameliorate almost all genetic disease in 1-2 generations (~40-60 years). We're so close in so many ways, now we're just trying to make sure the procedures are safe.
buboard 7y ago
This is the issue with science journalism: this should not be news - not yet. They should keep working with colleagues and report when the human trials are underway. It doesnt help the general public that these preliminary data are out , and in fact it erodes trust and creates complications. I know scientists are hard pressed to publicise their work for funding, but it should stay within the SFN conference for now
- retnuhllort 7y ago
  I'm not in favor of managing information flow to the general public so they "trust" the source. What if a member of the public reads this, and learns more about the topic. Is that a bad outcome?
  - buboard 7y ago
    There is too much of it, and it's contradictory. Someone who is interested in SCN2A could scan the abstrats of the SfN conference in a few days to find everything they need. But too much echoing of preliminary results in popular media creates false expectations and contradictions all the time. People absolutely should have access to preliminary scientific literature, just not through the popular press maybe
ImaCake 7y ago
This is just a useful model. All it's doing is allowing scientist to study the effects of disease and later switch it off again. As a kind of control. Plenty of useful data will come from this model, but the model itself isn't interesting to anyone not into Autism and Molecular Biology. The title is technically correct in the worst way. Sure, it tells the truth, but it implies a lot of things which are not true.
Cybernetic 7y ago
I have Autism. I don't know how I feel about this. It's exciting, but would a reversal remove advantageous traits of Autism too? There is little information about adults with Autism compared to what's available about adolescents. In my experience much of the info is about living with disabilities associated with Autism. I haven't found any research that focuses on the beneficial aspects of Autism - anecdotally I feel there are abilities of mind across the Autism spectrum that are especially useful, and for some, seemingly super-human. While one may gain some social skills, how much of their unique abilities would be lost to this process?
skissane 7y ago
ASD isn't really a single condition. It is actually a vast array of different conditions, with a wide array of different genetic and environmental causes. This therapy is only treating one single genetic cause of ASD; most people diagnosed with ASD, their symptoms are not due to this gene. In fact, many cases of ASD probably aren't due to a single gene at all, but a complex interaction of multiple factors, both genetic and environmental. The big problem with ASD research is ASD's lack of validity (see [1]'s conclusion "The findings reviewed indicate that the ASD diagnosis lacks biological and construct validity"). How do we know that ASD is a condition which really exists in nature, as opposed to simply an arbitrary grouping of symptoms with disparate unrelated causes? Honestly, we don't know that at all, and as this paper argues, there are good reasons to believe the later rather than the former is true. Researchers have been searching for years for evidence for the former proposition, and nothing convincing has been found; at some point, the logical conclusion is you can't find what doesn't exist to be found. [1] https://link.springer.com/article/10.1007/s40489-016-0085-x https://link.springer.com/article/10.1007/s40489-016-0085-x

124 points by daegloe 7y ago

batiste 7y ago

So, this is a reverse vaccin?

shaggyfrog 7y ago

(in mice)

not_a_cop75 7y ago
= in early trials

pavel_lishin 7y ago

I'm sure there are plenty of people who identify as on the spectrum here on HN; I'd like to ask y'all: If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this? What are the ethics applications of using a treatment like this on people who are so deeply impacted by autism that they can't meaningfully give consent?

rpmisms 7y ago
Absolutely. Being on the spectrum is socially miserable enough that I'd gladly trade an unpleasant chunk of my personality for it.
SolaceQuantum 7y ago
"If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this?" This is sort of an unrealistic hypothetical that isn't really informative, IMO, for a few reasons mostly attributed to the spectrum of how autism manifests and also that I doubt there is any such thing as "without any side effects". I think what would be more informative is to ask- if they would be willing to undertake a treatment course for their autism what side effects would they be willing to bear and for how minimal of symptom relief would they be willing to bear for? EG. Let's say the Cripsr therapy works only on resolving sensory information issues doe to fixing the neurons capacity to process sensory input. In consequence, however, is that the person has a higher likelihood for seizures and, later on, parkinson's. Or, the Crispr therapy works only on resolving neurological pathway issues when it comes to emotional intelligence- the patient will still have to undergo intense occupational therapy in order to learn social skills- worth it? I don't know. I don't have autism. But I think these questions will provide much more insight.
- ceejayoz 7y ago
  I don't think that's fair. The hypothetical with no side effects or safety issues means we have to consider the ethical side of "should we 'cure' autism". We have to answer that before any discussion of "what level of side effects are acceptable". See, for example, the Deaf community's feelings on things like cochlear implants.
  - scarby2 7y ago
    I'm not sure the deaf community's views on cochlear implants are entirely relevant here. There is no 'autistic culture' whereas there is very definitely deaf culture. Also we're not necessarily talking about a straightforward disability. If any of us were offered the ability to gan an extra useful sense then we'd probably take it... If we talk about something that profoundly changes our personality then maybe we'd be a little more hesitant.
    - ceejayoz 7y ago
      > There is no 'autistic culture' whereas there is very definitely deaf culture. There absolutely is. https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Controversies_in_autism#Pathology_paradigm https://en.wikipedia.org/wiki/Controversies_in_autism#Pathol...
  - big_chungus 7y ago
    I've never understood why some deaf people feel so strongly about it. The fact that deafness is part of their identity doesn't mean they ought to go around telling others they shouldn't try to hear, especially not so vehemently. I'd consider it roughly equivalent to the really obnoxious fire-and-brimstone evangelicals that yell that you're going to hell if you don't convert. Why do people care so much what others do with their lives?
hirundo 7y ago
Also if you're on the spectrum, if there was a drug that could make someone autistic temporarily, would you recommend it to others?
- thanatropism 7y ago
  Not autistic, but bipolar: you can achieve a reasonable simulation of euphoric mania, but that's not quite the same as a lifetime of dealing with that.
  - krageon 7y ago
    It is not the same, but it is equally amazing. Of course euphoric mania has the significant downside of being measurably harmful to your brain in the long term and is thus perhaps not a good comparison.
- pavel_lishin 7y ago
  I wish we lived in Banks' Culture, where this sort of thing was possible. I'd love to see what it's like to be on the spectrum, or what it's like to be gay, or what it's like to have a body of a different gender, or what it's like to be a bat.
- ActorNightly 7y ago
  I would. I think that being able to experience "emotion independence" in the sense that you can act on things that make sense rather than those that have the best emotional outcome can be good for people.
- tick_tock_tick 7y ago
  adderall?
gliese1337 7y ago
At the moment, it doesn't say much on the tin. So, no. It may repair typical neuron function, but how does that translate into functional changes in personality and social interaction? Based solely on that article, it looks like we don't really know that even for mice, let alone humans. I, for one, don't care what any treatment might do at the level of neurons--what I would care about is what the expected therapeutic outcomes are, regardless of the biochemical mechanism, and that data is completely missing.
WhyNotThough 7y ago
Given that it's a spectrum where on the spectrum would it end up? Neurotypical choleric extraversion or something?
- fsloth 7y ago
  Not all introverts are ‘on the spectrum’.
- deleted 7y ago
  [deleted]
drbojingle 7y ago
If I didn't like the result could I go back?
- deleted 7y ago
  [deleted]
fsloth 7y ago
I’m soon 40. I like to think I’ve made piece with the world - I pretty much grok most of the idiosyncrasies between myself and the society around me. Statistically I’m way beyond the age when the most important friendships are formed. I’d like to be a little less anxious, but that’s about it. It’s not enough to sign up for experimental neurological treatment. So no, I would not apply this to myself.
yitchelle 7y ago
I have a loving wife and two great kids, good job and a relatively conformtable life. My peace is made, so no, I wouldn't take it.
deleted 7y ago
[deleted]
kulahan 7y ago
If they're that deeply affected by autism, they almost certainly have a caregiver at that point. I imagine that's the solution - whoever has power of attorney for medical decisions would make the call for them. From there, it's simply a personal decision for the caregiver. If they've got it light enough that they can handle life in the real world (i.e. can enter contracts for renting an apartment, getting a car loan, etc.), then they can give meaningful consent for themselves.
buboard 7y ago
I m sure psychiatry has already answers to the last question And if i m detectably on the spectrum- yes i would! Not because i hate myself, but to experience the other side. I m kinda surprised that people say no - do they also say no to all recreational drugs? This crispring would be reversible anyway
r00fus 7y ago
> If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this? I think the real question is, if I as a hypothetical parent wanted to help out my newly-diagnosed child as being on the spectrum, I & my spouse would most definitely strongly consider it. The ethics are an interesting point, but kids don't get to choose parents or their skin color. If I as a parent/caretaker have authority to make this decision, it should be my decision to make (with due consideration of the impact it might cause).
- gugagore 7y ago
  I agree that's the real question! And its answer is informed by the original question. I don't and can't know what the right answer is. But I hope that if you are faced with this decision or any similar decision, you try to get perspectives of the adults who have lived with whatever diagnosis is at play, like the commentors here. Medical professionals are familiar with only a slice of these things. And the media and the "common" understanding also has only limited or distorted information.
Porthos9K 7y ago
I'm no more interested in being made neurotypical than I am in being made right-handed, cisgender, heterosexual, or Christian. A society that regards people who don't fit in as "defective" is itself defective, and ought to be burned to the ground.
- chr1 7y ago
  Autism does not only describe people "who don't fit", but also people who would die without someone else caring for them. A society that doesn't regard such people as defective, and doesn't try to help them (when they agree), is simply lying to itself.
  - gugagore 7y ago
    I think you lack compassion in your wording. We have evolved as social creatures, and we care for each other. We depend on each other in millions of ways, in millions of varieties. I would bet you too would die, or have died, without some care at key points in your life. It takes a village to raise a child. I argue it takes one to keep a human alive and healthy too. One piece of content in favor of my point: https://youtu.be/n3Xv_g3g-mA https://youtu.be/n3Xv_g3g-mA There's no need for people to be able to survive without care. And yes my society values individualism, but we should be able to critique it, and ask where that emerges from.
    - krageon 7y ago
      > There's no need for people to be able to survive without care. There is no need, but there should be the option. If we can provide that option to people that want it we should be allowed to. Just because someone feels that it infringes on their core identity does not mean someone else should not be treated for something they feel is a defect. Saying that this needs to be possible is not a lack of compassion, it is the most compassionate choice.
      - Porthos9K 7y ago
        > Saying that this needs to be possible is not a lack of compassion, it is the most compassionate choice. Pardon my cynicism, but I have no faith in the "compassion" of "normal people". Not when I've spent my whole life being told that I'm defective and need to be fixed. You might not want to force people into treatment, but my experience suggests that you're part of a small, sane minority.
CM30 7y ago
Hmm, I guess it'd depend on how much my personality, skills and other traits are linked to being on the autistic spectrum. That's the tricky part about these possibilities, we don't really know what someone who is on the spectrum (or for that matter, who has any other type of neurodiversity/psychological condition) would be like without having it. Does someone's interest in say, programming link to their autism/aspergers? Or their aptitude for it in general? There's always just that ambiguity, and that makes it difficult to decide even without obvious side effects. There are a lot of issues caused by being on the spectrum that I would love to have fixed by some miracle treatment like this, such as difficulties socialising or coping with crowds or strangers, or sensory overload or what not. But I would want certain other aspects of my personality to just vanish at the same time.
callesgg 7y ago
Even if you changed the gene they would still have all the traits that society calls autism. The traits that society calls autism are development traits that develop in the psyche over long periods of time. The actual gene mentioned here does not so to say directly cause autism, opposed to for example a bridge pillar that causes a bridge to float above the ground. There are many steps (under years of personal development) in between the cause (in this case a gene) and the traits that is the diagnosis.
pchristensen 7y ago
I have two children diagnosed. I'm confident that if I had grown up in the 2000s instead of the 1980s, I would also have been diagnosed. But none of us are debilitated by it, and if you took away the limiting factors, you'd remove much of our personality and interests as well. There's nothing about them or me that I'd trade our identity to get rid of. But I'm not facing the challenges that people with severe autism have, so grain of salt.
- Obi_Juan_Kenobi 7y ago
  I think you're seriously underselling the challenges of even 'high functioning' autism/ASD-1/aspergers. In this group, the suicide rate is nine times higher than the general population, contributing to a life expectancy 12 years lower. https://www.ncbi.nlm.nih.gov/pubmed/26541693 https://www.ncbi.nlm.nih.gov/pubmed/26541693 As for identifying with the disorder, this is not an uncommon response, but I think it's fraught. It seems a coping mechanism more than a reasoned reflection of how the condition shaped one's life. Understandable, certainly, but also potentially quite misguided.
  - IIAOPSW 7y ago
    The suicide rate among LGBTQ is also some outrageous multiple higher than average and in the not to distant past that was also a bona fide psychological diagnosis. You see the intrinsic problem with codifying anything out of the ordinary as a "disorder"?
    - giggles_giggles 7y ago
      That's a slippery argument. At the low functioning end of the autism spectrum are behaviors like tantrums, compulsive violence towards self and others, and behaviors like fecal smearing. We also need to be careful not to ignore clearly disordered behavior. That is not compassionate towards the afflicted, either. If a disorder can't be labeled a disorder, the patient cannot be treated.
      - 7y ago
ActorNightly 7y ago
I wouldn't. Me being on the spectrum is what gives me the technical advantage over a lot of my peers, and is the reason I can have a stable, high paying job and do the things that I want to do. And it is not like I am unhappy or struggling from the effects of being on the spectrum, like connecting with people. Yes, there are definite downsides, but at the same time, Id argue that there are downsides to being too emotional dependent to the point where someone fails to act on logic and reason to a certain extent. In both cases, me and the other person find a way to be happy within the constraints of our lives, accepting the drawbacks as a necessity.
- Cybernetic 7y ago
  Yes, I completely agree. The 'abilities' I have due to Autism have been advantageous for me creatively and professionally, in spite of social struggles. Those abilities aside, people with ASD tend to have high levels of focus and deep knowledge (on one or several subjects), those traits are as important to identity as social norms. I wonder who I would be post treatment if this were available. Would I remember abilities I had that no longer exist? I was diagnosed late in life, at 40. I am comfortable with who I am and if there were any chance I'd lose myself to 'treatment' it would be a hard no for me.
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dooglius 7y ago
If it actually works in humans, and I have the gene in question (both of which I doubt are true in actuality), then unequivocally yes, even if the side effects were extremely severe. > What are the ethics applications of using a treatment like this on people who are so deeply impacted by autism that they can't meaningfully give consent? What are the ethics of fixing broken bones in infants who can't meaningfully give consent?
Cybernetic 7y ago
I posted this response before I saw your thread (reposting here for context). I have Autism. I don't know how I feel about this. It's exciting, but would a reversal remove advantageous traits of Autism too? There is little information about adults with Autism compared to what's available about adolescents. In my experience much of the info is about living with disabilities associated with Autism. I haven't found any research that focuses on the beneficial aspects of Autism - anecdotally I feel there are abilities of mind across the Autism spectrum that are especially useful, and for some, seemingly super-human. While one may gain some social skills, how much of their unique abilities would be lost to this process?
pgt 7y ago
In a heartbeat.
GordonS 7y ago
Single data point here. As someone else already replied, if I'd grown up in the 2000's instead of then 80's, I'd probably have a diagnosis of autism, to some degree at least. I believe I'm somewhere on the spectrum. I'm an introvert, I'm often quite awkward socially, and frequently just don't "get" other people's way of thought that seem to be obvious to everyone else; if it's not "logical" to me, I just don't understand it. My wife has said I might be autistic numerous times, and family members have suggested it a few times too. I can only assume this is due to a genetic mutation. If a treatment was available to change this, I would gladly take it - I loathe feeling so alien and alone.
- loriverkutya 7y ago
  I would probably go and get an assessment in your place, it helped me a lot to understand why I feel alien and alone in some situations. It would also gave me access to resources which made my life easier and my relationships more harmonic. (Also, it's anecdotal, but wifes seems to be very good pinpointing autism)
sidlls 7y ago
A person with that severity of autism will never be able to consent anyway; parents or guardians should not feel an ethical concern over consenting on their behalf for something like this. On the other end of the spectrum you have people like my child: he's got social deficits and grapples with emotions, but is in public school and (with ~$25k in therapy a year) is able to function. Under no circumstances should it be anybody's decision but his whether to have such a treatment, in my opinion.
somebodythere 7y ago
My "high-functioning" autism confers several difficulties and a few unique advantages. I've developed enough coping methods to smooth over the former to a point that I don't feel a cure would be on-net beneficial to me. However, I have a feeling that the fact I can't choose whether I have autism is the reason why neurotypicals find what I don't/can't mask interesting or endearing rather than annoying. If there was a cure, suddenly I would have a choice, and I think people would have a lot less patience for my symptoms. "Why not just become normal?" I would feel pressured to take the cure.
hoseja 7y ago
This feels to me like a path to true Idiocracy, functioning autists are vital to technological and scientific progress.
burpsnard 7y ago
For me, no way. On balance i feel more enabled than disabled. You can argue my perspective is skewed, and i yours. I wish there was some way to give aut insight to neurotypicals, other than reading PKD on LSD. For every 'cure' i hear of, i wonder can it be used to mane an NT autistic ? Also: i suspect a lot of debilitating brain diseases and injuries get misdiagnosed as 'autism' as the criteria are very blunt.

Erwin 7y ago

Elizabeth Moon (fantasy and mil sci fi writer and a former marine) happened to write a book about almost exactly this modification being available: https://www.amazon.com/Speed-Dark-Novel-Elizabeth-Moon-ebook/dp/B004BDOJN6 https://www.amazon.com/Speed-Dark-Novel-Elizabeth-Moon-ebook... -- I enjoyed that more than the canonical "Flowers for Algernon"

Porthos9K 7y ago
Oddly enough, Amazon claims the book isn't available.

hoopism 7y ago

My daughter was diagnosed with Autism at 16 months. Just this year (she is 6 now) we found a genetic cause (SCN2A, the one mentioned here). We have invested a ton of time and energy into therapies and she is doing very well... I wonder how receiving the diagnosis in reverse would have affected us mentally. I have met others who got genetic results and pushed more into finding a cure. I always felt like any potential "cure" wouldn't be in her lifetime... now I wonder.

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asdfx 7y ago
What tests are done to determine genetic cause? This would be really helpful, appreciate your info
- hoopism 7y ago
  We did a genetic test for small number of well known genetic disabilities when she was younger that did not yield a result. Our neurologist then recommended a "whole exome sequencing" a few years later. This is where we found a result. Insurance is often reluctant to cover this but it's SOMEWHAT affordable (want to say 2-3k with some hospital magic discounts). I can't say it has affected our course of treatment but we were concerned about what other health related issues may be associated with the diagnosis. And it is somewhat promising that a treatment may someday be available. I would highly recommend pushing for testing. I am told they continually with run your results against know mutations as they find more. So even if you don't get a result today you may someday.
  - asdfx 7y ago
    Thank you for the elaborate response, this is helpful
Medicalidiot 7y ago
CRISPR could ameliorate almost all genetic disease in 1-2 generations (~40-60 years). We're so close in so many ways, now we're just trying to make sure the procedures are safe.

buboard 7y ago

This is the issue with science journalism: this should not be news - not yet. They should keep working with colleagues and report when the human trials are underway. It doesnt help the general public that these preliminary data are out , and in fact it erodes trust and creates complications. I know scientists are hard pressed to publicise their work for funding, but it should stay within the SFN conference for now

retnuhllort 7y ago
I'm not in favor of managing information flow to the general public so they "trust" the source. What if a member of the public reads this, and learns more about the topic. Is that a bad outcome?
- buboard 7y ago
  There is too much of it, and it's contradictory. Someone who is interested in SCN2A could scan the abstrats of the SfN conference in a few days to find everything they need. But too much echoing of preliminary results in popular media creates false expectations and contradictions all the time. People absolutely should have access to preliminary scientific literature, just not through the popular press maybe

ImaCake 7y ago

This is just a useful model. All it's doing is allowing scientist to study the effects of disease and later switch it off again. As a kind of control. Plenty of useful data will come from this model, but the model itself isn't interesting to anyone not into Autism and Molecular Biology. The title is technically correct in the worst way. Sure, it tells the truth, but it implies a lot of things which are not true.

Cybernetic 7y ago

I have Autism. I don't know how I feel about this. It's exciting, but would a reversal remove advantageous traits of Autism too? There is little information about adults with Autism compared to what's available about adolescents. In my experience much of the info is about living with disabilities associated with Autism. I haven't found any research that focuses on the beneficial aspects of Autism - anecdotally I feel there are abilities of mind across the Autism spectrum that are especially useful, and for some, seemingly super-human. While one may gain some social skills, how much of their unique abilities would be lost to this process?

skissane 7y ago

ASD isn't really a single condition. It is actually a vast array of different conditions, with a wide array of different genetic and environmental causes. This therapy is only treating one single genetic cause of ASD; most people diagnosed with ASD, their symptoms are not due to this gene. In fact, many cases of ASD probably aren't due to a single gene at all, but a complex interaction of multiple factors, both genetic and environmental. The big problem with ASD research is ASD's lack of validity (see [1]'s conclusion "The findings reviewed indicate that the ASD diagnosis lacks biological and construct validity"). How do we know that ASD is a condition which really exists in nature, as opposed to simply an arbitrary grouping of symptoms with disparate unrelated causes? Honestly, we don't know that at all, and as this paper argues, there are good reasons to believe the later rather than the former is true. Researchers have been searching for years for evidence for the former proposition, and nothing convincing has been found; at some point, the logical conclusion is you can't find what doesn't exist to be found. [1] https://link.springer.com/article/10.1007/s40489-016-0085-x https://link.springer.com/article/10.1007/s40489-016-0085-x