The big problem with ASD research is ASD's lack of validity (see '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.
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.
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?
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
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.
It is perfectly possible to seek treatment for personality traits that are not a disorder but still impact your life significantly.
Isn't that just the definition of the word "dis-order"?
Suicide rate doesn't tell you what you want, as the sibling comment about the comparison to LGBTQ+ people points out. My reason for posting this comment is to suggest that anyone reading take a look at https://en.m.wikipedia.org/wiki/Social_model_of_disability
I’m not underselling anyone else’s experience - I’ve seen some of the extreme personal and family difficulties people with severe autism face. I’m saying that for me and my family, we have been well equipped to deal with the difficulties it presents, from a healthcare, social support, family support, and financial perspective.
I do not at all identify with the disorder, and we struggle with the degree to describe our kids as well. I was trying to say that a) I am me and I know and like myself, b) by the current diagnostic standards, I believe I would have been diagnosed as a child, and c) I don’t know how much changing b would affect a.
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.
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.
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.
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.
The assumption that there are independent physical constraints and ethical side is wrong, because depending on how actually the reality works, the same action can be either the most ethical or most unethical action.
That was the precise attitude that got us scenarios like https://en.wikipedia.org/wiki/American_Indian_boarding_schoo... and https://en.wikipedia.org/wiki/Stolen_Generations.
The boarding schools were about government "saving" children by not allowing children and their parents to choose.
The people who are unhappy about cochlear implants, want to "save" deaf culture by not allowing some other people to choose for themselves whether they want to be death or not.
So the similarity is the other around.
Asking a deaf person "would you cure your deafness if you could with no side effects" ignores the reality that current abilities to 'cure' deafness do come with significant side effects, and people who consider them need to also consider the pros and cons of undergoing the procedure.
In contrary to 'stripping away info to dive into the ethics' you are trying to do, I believe you'll never approach the ethics without the nuances of the actual circumstances people are actually likely to be dealing with.
"Should we do the procedure at all" comes before "are the side effects of a specific implementation of the procedure worth it".
If this becomes a thing, why would society accept autistic people, rather than telling us to undergo treatment that we don't want to make us more like them?
At the same time, when we see people that do not vaccine their children that also makes me angry. Perhaps it is a fuzzy line and we need to recognise that this is the case without making too many blanket statements.
> If this becomes a thing, why would society accept autistic people
Society has no requirement to accept autistic people. Some people will be willing to work with them just as they always have and some people might not. That's their choice, just like it is the choice of an autistic person (or maybe their parents! I'm not sure) whether or not to seek treatment. If you feel that being excluded sometimes is a fundamental pressure to seek treatment, I have bad news for you: You will never get along with everyone.
I lack fine motor control, I'm unable to write legibly with a pen, i have issues with spacial perception and regularly fall over pretty much anything, i struggle with any task that requires co-ordination (if you threw a ball at me i'd have maybe a 30% chance of catching it). I also don't have binocular vision (anything thats supposed to be 3d looks the same as the picture to me). Luckily in the age of technology i this has not impaired me significantly but i couldn't claim to not have any kind of disability...
When there's a (potentially invasive/experience-altering) treatment which makes people more able to fit into existing society, that society will often pressure people into receiving that treatment. This is, obviously, rather upsetting, and I imagine a lot of deaf people would rather the treatment didn't exist.
Also the controversy around cochlear implants is mostly about giving CIs to young humans. It's not that much about "hearing again". (In fact I don't think CIs are as effective later in life.)
The word disability has a lot of meanings and a lot of uses. Only one of them is about getting access to accommodations.
Deaf people absolutely label themselves disabled for the purposes of getting access to accommodations, like you suggest. I think you misunderstood that they're upset about all the other things that are associated with disability. The idea that deafness is "lesser" (e.g. hearing loss) simply does not resonate with most culturally deaf people.
I really hate when emotions get in the way of objective definitions.
I really hate it when objectiveness gets in the way of compassion and respect for human beings and life generally.
Also, of course deaf people agree they cannot hear and have one fewer functioning sense. In some signed languages, the sign for deafness is an open hand, but with one of the fingers flexed (4 of 5).
And I will argue in fact it's hearing people who get "emotional" about the idea that deaf people don't care about not hearing. By the way, "5-4=1" is not the most important difference for hearing people either. Hearing people will talk about hearing birds songs and stuff.
There absolutely is.
A society that regards people who don't fit in as "defective" is itself defective, and ought to be burned to the ground.
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
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.
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.
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.
> . 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.
Your response is about people having the right to label themselves defective.
If you argue that it's compassionate to allow people to live the lives they want to live, that's beautiful and I agree. I am arguing it's NOT compassionate to insist that certain people are defective, especially regardless of how they feel about their own lives.
I mean, the word "defective" alone, c'mon.
No, not everyone knows that. I feel quite humbled by my experience meeting people with "defects", who are proud of their "defects", would not choose to remove their "defects", actively seek out relationships with other "defective" people, and have formed a cultural identity around their "defect", to the extent that they hope their own kids are also "defective", maybe not to the strength that other people hope their kids aren't defective, but at least express a preference.
I hold it as a fundamental, nowadays, that I cannot decide what is and is not defective for other people, especially strangers, and especially people who themselves actively say "I'm not defective!". I rather focus on concrete harm to figure out how to exist in the world, for myself and for others.
I think it does harm to the world to approach all disabilities from a mindset that is focused on "defectiveness". I will take my lead from other people with the relevant disabilities. "Nothing about us without us" is a powerful slogan that guides me to do so.
I don't know whether you identify with any "defective" or defect-adjacent subgroup (since you talk about all the different things that grouped under autism), but I know for sure not everyone is. And so not "everyone knows that some forms of autism give much more disadvantages than advantages". When I try to drill down on what that really means (how would you even determine how to weigh the advantages and disadvantages?), the whole endeavor seems divorced from individual realities and pointless.
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.
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).
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.
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.
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
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.
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?
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.
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.
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.
> 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?
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.
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.