As someone on the spectrum, I don’t necessarily know if this is something I would want. My ASD is a big part of my personality; if these social “difficulties” (which really just mean I click with a different type of person) were “solved” I don’t know I would be the same person.
Maybe this can offer some hope for others with more profound issues, but if you’ve found a way to function in society I’m not sure this will be very attractive outside a “let me try and see what it feels like” scenario.
I have ADHD. Drugs like ritalin never "fixed" me. They basically allowed me an exchange: give up the charisma, personality, sociability, and appetite for 8 hours of being able to focus on something. I won't write an essay here but trust me that the two versions of me were day and night and both had significant benefits and challenges. I really struggled growing up.
By the time I got to college I learned to use the drugs as a switch I could flip when I needed the focused version of me.
Not that ADHD and ASD can be compared, but I wonder if maybe ASD treatments could offer that option. Ie. Not to "fix" you but to give you a tool to be wielded under your own control.
ADHD checking in - I function with my ADHD and it's part of who I am. All I need is a little support and understanding due to my lacking organisational abilities and consistency.
That said, I remember someone who's younger brother was severely autistic. He'd shit himself as a means of communication, he was barely able to talk - he'd never be able to integrate in any meaningful way. His parents lives were spent 24/7 caring for this kid. They loved him but it destroyed their family. If a drug could bring someone like that to the level they can be mildly autistic and function and provide a far higher quality of life to those and those who would otherwise have to support them, why not at least make it an option?
As long as we're just fixing impairments, not trying to "fix" people.
If I could undo whatever 8 years of concerta did to my brain (and start growing like a kid again where I left off), I would give my life earnings for that.
Concerta/ritalin/etc are sit down and shut up drugs. It makes you feel neurotic and trapped inside your own head so you're not as physically disruptive as a healthy kid should be. It leads to paranoia and anxiety that you only grow accustomed to and can't grow out of. The lack of appetite stunts development. Just look for real world stories of people who've taken these drugs and paid more attention to what happened to themselves than "yeah I was less disruptive."
My understanding is that ASD and ADHD are often found together. I don't have enough familiarity with either to know where one begins and the other starts.
Thanks for sharing your perspective, as the parent of a child just diagnosed with both conditions it's useful!
They are often confused for each other, but I tend to think of ADHD as “ASD lite”. They have some of the same issues with focus and attention (esp with hyperfocus) but kids with ASD tend to show a lot more sensitivity to sensory perception. Loud noises, bright lights or uncomfortable textures become emotional outbursts. Hyperfocus also tends to be more of a constant state with ASD and can lead to emotional distress. Kids with ADHD get mad when they don’t get their way; kids with ASD get mad when they’re uncomfortable and don’t know how to express that or deal with it.
It all depends on the severity of the ASD though as to how constant it is.
I do almost feel a diagnosis of both is redundant though.
What I've been told is that people with ASD have a lot of the same issues with their executive functioning, and in many cases they can be diagnosed with both ADHD and ASD. Furthermore, it's quite common for siblings of those with ASD to suffer from ADD/OCD/etc.
However, one crucial difference is that the ADHD type of 'hyperfocus' is often in practice not as useful as it seems/feels, whereas the ASD kind of obsessive focus can be very productive and useful.
My personal experience, comparing myself to friends who have (severe) ADHD, is that a crucial difference is that I find it easier to see the bigger picture, assuming I'm not stressed (which is difficult to achieve), and can sort of channel my 'hyperfocus' in the right direction. These friends often struggle with this, and can easily spend hours or days doing something that in hindsight wasn't the right thing.
(interestingly, I feel that this 'problem' also has the upside in that they are often more artistic than I am, perhaps because a lot of what they do is not limited by a clear 'goal')
I actually have had the opposite experience with hyperfocus — if I get sidetracked into a subject I personally find very interesting but know others don’t, I have a harder time letting go of it. I know what the right thing to do is; my brain just won’t let go of the thing it’s focused on and I get emotionally agitated when I force myself to switch.
For me at least, the core component of my ASD is the complicated link between sensory input and my emotional state. The focus and attention problems are more that I have to really concentrate to understand the meaning of everything going on around me, and that gets exhausting. I get fatigued of being “on”, so my attention lapses.
Very interesting. I never thought of that before. I certainly have no traits I'd consider on the autism spectrum. I just couldn't focus. Sit me quietly in 5th grade with a book and I'd read a page and have absorbed none of it because my brain wandered. I'd ask to go to the washroom just to get out of my desk and take the exciting trip to the washroom. Teachers eventually started asking if I had problems because I'd ask to go to the washroom 7 or 8 times a day.
I'd say 3 or 4 times a week when I had classes. Then down to 0 times a week during co-op (working for an employer for 4 months).
Basically I selected to have it any time I had a major project to do or studying to do. It was absolutely glorious because I could go to classes, struggle through those a bit, get home, be social and have friends, then at about 9pm have some concerta and work on a project until 5am.
And maybe some of this sounds unhealthy but gosh did it ever work. I was a D student in high school and I managed to actually get into college, get two degrees, some significant awards, and a dream job after graduation. Without the opportunity to take Concerta when I wanted to, I all but guarantee I never would have gone to college.
I think the experience of being a person goes a lot deeper than having any specific personality, if it didn't we wouldn't be sorting traits into good and bad. If not having learned to read has kept someone away from the influences of literature, we could say that it has impacted their personality, but would that be an excuse to never teach them?
Some behaviors associated with autism are really results of having less social influence acting on one's self (due to both slower learning and isolation). Would we consider them a fundamental part of the person, or just evidence of areas that the person still can grow in?
I think it depends on the person; but I personally see a lot of people I would identify as high-functioning people on the ASD spectrum working in senior management positions.
We are able to be successful exactly because we have learned to expertly regulate our public and private behaviors to be acceptable to the audience. We’re really deliberate about the soft skills stuff because it doesn’t come naturally. We do that because we can’t read your body language or facial expressions at all, so we have to be as completely inoffensive and congenial as possible.
Many of us have learned how to delegate effectively because there are certain kinds of work we simply cannot do.
We tend to be much better with written communication because it’s easier to compose your thoughts in a text editor than on the fly. As a result we are often seen as excellent communicators in the digital age!
We’re really good at making lists of things (I should probably stop that)
We also tend to talk at length of topics of very little interest to anyone else (ok, I’ll stop now.)
What I’m saying is that a lot of tendencies that are totally attributable to people on the high-functioning side of ASD can be generally beneficial to certain kinds of work. I’m sure you’ve seen these traits in people you know. So I’m not sure it’s always something that’s always detrimental.
Sure, I know a zillion people superficially but I can’t handle more than one or two friends at a time. And I’m ok with that; it’s not debilitating and I enjoy my time alone. I just don’t think it’s something to fix.
Edit: also not implying that all people on the spectrum are this way at all; just that I do see a lot of us in various management functions where Machiavellian politics is in play. Your image is everything and you have no friends, which someone with ASD and this personality profile will feel right at home with.
> Some behaviors associated with autism are really results of having less social influence acting on one's self (due to both slower learning and isolation)
This isn't supported by the research, which shows that autistic people struggle with social communication even if you give them intense courses about how to be better at social communication.
What you're suggesting is dangerously close to the "refrigerator mother" hypothesis, and that caused harm to many people.
This touches on the fundamental debate whether autism is a disease or not. Your comment and especially comparing autism to not being able to read implies that but I personally think there might be parts of the autistic spectrum that do not fall under that definition.
Autism is especially difficult to categorize as a disease or even a negative, but even when you can relatively easily label something as a technical disability, like deafness, there are perfectly valid reasons why the folks affected would be pretty strongly opposed to a cure. Any issue pertaining to identity is always going to be a very sensitive one.
I tend to lean toward a trait, and there really is no arguing that there are benefits, at least on the lower end of the spectrum. Modifying genes for "ideal" traits in humans seems like a bad idea to me...
This is a myth. Authism is a spectrum disorder and you don't meet the more disfunctional cases very often. A few percent are also savants but not everyone in the spectrum has some superpower. The severe cases are very crippling and place a heavy burden in the family (specially because the life expectancy is normal so you will not be always available to care for your autistic son).
I think the discussion should not be whether autistic people have some kind of superpower but whether there are parts of the autistic spectrum that can't be thought of as a disease.
There are obvious examples of Autism that are absolutely objectively terrible for the person experiencing it, this is not about those cases but about the "less severe cases" where an autistic child can go to a normal school and lead a generally normal life. If that is the case, I think the line between what you call a disease and mere personality traits is actually not very clear. Instinctively I would be very careful to describe someone's personality as a disease just because it is different from other peoples behaviour.
The problem with my thinking on the other hand is probably that the definition of the word autism itself might be unclear when considering these edge cases.
It's not a myth. I'm convinced that, all else being equal, being able to obsessively focus on one thing will bear its fruits, even if it can be disastrous in areas like social life and personal health.
The idea that people on the spectrum are more likely to be savants is a myth (the opposite, that savants are more likely to be on the spectrum less so, from what I understand), but the person you responded to made no such claim.
I found this NYT article from a while back fascinating. Basically this guy has TMS (Transcranial Magnetic Stimulation) and he starts feeling more emotion. He discovers his wife is super controlling and ends up getting a divorce. He's not sure how much better his life actually gets from this "cure".
https://well.blogs.nytimes.com/2016/03/18/an-experimental-au...
As a father of someone who is about on the middle of the spectrum, I kind of agree. I couldn't separate his personality from his ASD - however if something could alleviate things like the stress he gets from sensory overload then that would be great.
I think it depends on how bad it is. If it's in a way that a person is introverted and has some peculiar communication style, that's one thing and if the person can not go outside, visit public places, hold a job, get an education, etc. then it's a different thing. I imagine some people would very welcome it, some would stay away from it.
This was my first reaction too. From the perspective of the person who would be taking this treatment, this sounds less like “alleviating symptoms” and more like adding an extra sense or altering their perception.
Whether a condition is labeled a disease is less important than whether it affects your ability to function and be happy, so definitely should be evaluated on a case by case basis.
Our personalities can change dramatically as we age and yet we retain our sense of individuality. People struggle to be stonger and if medicine can help then it should. If it's not right for everyone, that's okay.
This is the topic of the book "Speed of Dark" by Elizabeth Moon - the self identity of someone who has high-functioning autistism as an adult and the possibility of having it cured.
This also touches on the community that forms for people with a particular disorder or disability (e.g. the deaf community, the blind community being two that come to mind the most easily with their own culture).
> if you’ve found a way to function in society I’m not sure this will be very attractive
I think this is the key point. Some of us are high-functioning and have found ways to operate in normal society, but many people are effectively crippled by their autism.
High-functioning autism has many beneficial side effects, and I would be loath to give them up. (For example, even just the fact that you see things differently to the people around can be really useful).
> I’m not sure this will be very attractive outside a “let me try and see what it feels like” scenario.
I think that's exactly the value. Once you've tried it out, you'll be able to make an informed choice. I certainly wouldn't presume to choose for you, and I hope no-one else would do so either.
The "disadvantage" is that the article repeatedly calls the effects "long lasting"
It is complex indeed, specially for borderline cases. Looks like my son is landing on the functional side of the spectrum but it is always a coin toss. He will be 5 in May and is doing great attending a regular school although he is fortunate enough to have a dedicated tutor with him in class.
One of the concerns about treatments for ASD and ADHD is that parents could be incentivized to do what is convenient for them, rather than what is best for the child.
Parents don't prescribe drugs, doctors do. No system is perfect but I trust doctors and parents to do a better job than politicians and social workers when it comes to deciding what's best for each unique child.
We are talking about lifetime medication here so there is a huge incentive for drug companies to campaign for chemical solutions. Not so long doctors prescribed lobotomies for trouble-makers. Parent is correct here.
It's something everybody else would want because its unreasonably difficult to deal with autistic people. I have sympathy for those who can't help it but that sympathy evaporates the second there's a cure.
HDAC inhibitors have been discussed before on /r/nootropics and Longecity. I was part of a group buy for Vorinostat, which is a medication with a similar mechanism of action. I only took it once and had a positive experience where I felt very "child-like", in the way that the world seemed vivid and exciting. I haven't taken it since due to concerns about interactions with some of my other medications.
The primary goal of many of the people in the group buy were fear extinction and memory enhancement. I haven't seen much discussion on it since the initial excitement.
Vorinostat was amazing to me as well in a similar way. I seemed to quickly develop a tolerance for it though, and I'm scared of increasing the amount beyond that. I heard that you couldn't build a tolerance for but that didn't seem to be true in my case.
So little research is done on Autism from the perspective of adults living on the spectrum - almost all the funding and research seems to go towards childhood and to give parents coping mechanisms.
IMO we need clear clinical definitions of different parts of the spectrum so we can have more intelligent conversations about it - is a study cohort involving 10 year olds ones who cannot clothe themselves or participate in regular school activities, or ones which have some social reading deficits but can still participate? Its always very difficult to tell.
Does it really make sense to partition the spectrum? It feels more reasonable to replace these exact partitions with something like 'prototypes'.
The partitions would make sense if each partition corresponded to a specific physical 'defect'. Such that it actually makes sense to treat everyone in that partition the same.
This is why we distinguish diabetes Type 1 from diabetes type 2. This is why we distinguish between the flu and tuberculosis.
But if autism is indeed a spectrum, and people are spread quite evenly over the spectrum, the partitioning stops making sense. Quite dangerously, it suggests that all people in that partition have 'the same problem', thus research and treatment would treat that partition as the same. If this is not the underlying reality this really hinders effective treatment.
Consider how effective general medicine would be if we considered fever to be a spectrum, and treated based on what interval someones temperature fell in. That would be a disaster. Expanding such a system by including more variables (how sweaty is the patient, do they shiver) or by controlling for more confounding variables (compensating for the circadian rhythm) does not help either.
Autism can't be described along a single dimension like temperature can be. Some people with autism are sensory-seeking, some are sensory-avoiding, some are a mix of both. Some act almost immune to pain, while others definitely aren't. Some have no sense of danger, while others are overly cautious and afraid. Some are violent, but most aren't. Some never speak, but most do. Some run wild, while others are rule-followers almost to a fault. My son is newly-diagnosed, and I am constantly surprised by how little he has in common with other kids who share his diagnosis. Do all of these kids actually have the same condition? I don't think we really know the answer to that question yet.
It's definitely not the same condition - like in most cases in psychiatry.
Unlike in medicine, when you can often classify problems by their pinpointed sources (e.g. a virus/bacteria), in psychiatry it's usually a set of genes and other factors that comes into play, and various subsystems that broke down giving a certain outcome.
We group psychiatric disorders the way we do it, because the science for distinguishing the sources of disorders isn't good enough yet to have a better system.
It's similar to the taxonomy of plant&animal species before the advent of genetics. We had to group them by the way they looked, not by their real relationships.
> Quite dangerously, it suggests that all people in that partition have 'the same problem'
At the moment there is little way to tell or reference whether a studied cohort happens to be on one end of the spectrum or the other, or mixed between. I'm mostly advocating on behalf of adults and parents of those on the higher functioning end of the spectrum (because I'm a part of that group), who not only have to deal with a general lack of good age-specific information, but ALSO a huge amount of false-positive data. Most support groups for example are for caretakers of those on the lower end of the spectrum. As a result, those who could use data on their side of the spectrum to help themselves, or advocate for their own care almost always have to deal with wrong or misleading information.
Imagine you had an incurable illness that was moderately debilitating to you, but in harsher cases would paralyze the victims. If you or your doctor wanted to look up how to treat your symptoms, you would only get tips on how to operate paraplegic bathrooms and support groups for caretakers. You try going to a support group with victims of the illness, but find them to be in a vastly more difficult position than you. Yet you still suffer. Its a feeling of loneliness that is really hard to express.
Sidenote: from a charity/financial perspective it is advantageous to group different conditions under one name. Look at cancer research, which receives the most funding of all diseases, but which can really be divided into many (200+) different fundamental types.
Is each cancer considered unique, though? Or would the cure for, for instance, breast cancer, also deal with other forms as well? After all, we already have fairly standardized procedures for most types of cancer.
So if it is possible to cure several with the same cure, then I'd disagree with saying there's over 200 different "fundamental" types of cancer.
Cancers have common traits: spreading uncontrollably, metastasizing - these are what make cells cancerous.
But cells from different specialized tissues tend to become cancerous in different ways, by expressing different genes. So a treatment that targets a particular gene expression may work for one type but not others.
And a cancer that returns after treatment will have yet a different gene expression (usually resistant to that particular treatment).
It is definitely a good idea to look at it independently because there might well be, say, some genes that cause mild case and, in combination with another gene that causes a debilitating one. Its important to not throw the baby out with the bathwater.
> So little research is done on Autism from the perspective of adults living on the spectrum - almost all the funding and research seems to go towards childhood and to give parents coping mechanisms.
Well, being able to take a child who is severely autistic with no chance of independent life and moving them to a self-sufficient, if slightly odd, adult is probably more useful to society than helping adults or children who already can function acceptably, more or less.
In addition, I don't always like the whole "autism spectrum" because it's a symptom-based classification that, much like cancer, we're almost certainly going to learn is actually multiple independent diseases.
Mostly parents will be into this. No one would do this to themselves as they will have similar feelings as most (they don't want to give up who they are).
Wether being on the spectrum has been good or bad for you; it is you.
However parents are really great here; they really don't give a crap about their kids feelings they just want the _best_ for him.
> What I mean is they don't want to be embarrassed by their child.
I know this for a fact ... I used to think my mother was trying to get me all the help in the world but no she wanted a normal child at all costs.
I have ADD with autistic traits, and let me tell you from the bottom of my heart that you are wrong that nobody would like to change themselves.
While I love some parts of my personality, I would have happily given some of that up if it meant I could function socially and not get burnt out by trying to simply work a regular job, cook a meal most days, and keep up with the most basic chores.
But yeah, I definitely don't think parents should have any say when it comes to these kinds of medication. As all medication they should only be given to people who suffer.
If you didn't, and don't suffer, you should not have been medicated. I did suffer, I do suffer, and so does my daughter. I would like to have the choice for myself, and her for herself. We waited until she herself recognised that she didn't want the suffering her traits caused her with how the world currently works. Ideally, I would have changed the world for her to not need, or want to change. However, changing the world is rarely a choice we get to make.
Quite frankly, needs of autistic child would drive me crazy. It is not easy to be forced to total routine, it is not easy to deal with major temper tamtrums kid objectively cant control well over the age you get these with neurotypical kids. It is major work to negotiate the rest of world for them.
Being parent of autistic child is much harder then being parent of Neurotypical child. Some level of "I want my life to be easier too" is not betrayal.
Eh, maybe… but I am reminded of the observation that if a single tweak could significantly enhance mental abilities, evolution would have probably given it to us already. I think Eliezer Yudkowsky has a longish piece to this effect (please forgive me if I am mis-remembering).
I wouldn't describe charisma as a "mental ability." Rather, IMHO, there's a tradeoff between the type of thinking that helps you "win" status and power in a socially-fraught scenario (i.e. playing the Game of Thrones); vs. the type of thinking that helps you come off as being a person your audience would like to take out for a beer.
Or, to go even further, people will like you more (find you more "charismatic") to the exact degree that their predictive model of your current mental processes—built up by observing you—doesn't involve you putting in that extra work to seek status and power. You get more charismatic by shutting mental processes off! (And then signalling that you've done so, by e.g. saying things that cost you status that you wouldn't say if you cared about status. Like people do when slightly drunk!)
Super charisma or other abilities in all members of a group could have negative reproductive consequences and reduce the genetic fitness of that configuration, even if it's available.
Then you might expect a balance where everyone has a low chance of expressing such a fenotype. I believe there are ideas that color-blindness has a benefit like this. The same with sickle-cell anemia.
Not in cases where the deficits caused by the tweak are compensated for by modern culture. For example, it could be that natural selection made learning hard for adult humans in order to preserve scant knowledge in prehistorical times. But now that we have written culture this may no longer be necessary or desirable.
better example: depression and anxiety probably could have been selected by evolution to keep you out of danger, but in the modern minimally dangerous world no one would choose to have those traits if they could avoid them.
> if a single tweak could significantly enhance mental abilities, evolution would have probably given it to us already
Only if the tweak were beneficial to humanity as a whole would we all have it. We have developed many traits (such as selflessness) that are not in our best interest, but are in the best interest of our society.
It is quite plausible that evolution has found that tweak, but has only given it to a small minority of people, much as it has only given autism to a small minority of people.
Evolution is not an endless race to a superior form: mother nature is content with "good enough". Many modern sharks arrived 100 million years ago while modern humans are believed to be 70,000 years old. Why? Sharks were good enough.
Humans are good enough now. Even weak people can survive just fine - even people with defective genes that would not survive enough to reproduce a century ago. Not only dumb people can survive but there are evidence they procreate a lot more than smart people.
Don't mistake the term evolution for selecting only intrinsically superior or ideal traits. What if humanity evolve to being dominantly near sighted because it is no longer a killer condition?
Does it even make sense to talk about "superior" or "ideal traits" in humans? People who like to talk about eugenics tend to end up wearing funny little hats and red arm bands (only half joking here). :-)
I used to care about the direction mankind is taking when I was younger. Now that I have way more years behind me than ahead - I will die soon and so will everyone I know - I could not care less. It may sound bitter but it is also liberating.
The last person to leave the planet please turn the lights off. Or don't. All I know is that I won't be here.
Are the people who are having lots of children that survive to adulthood today different in significant ways from the people who had lots of children who survived to adulthood 100 years ago?
Clearly, yes.
> Not only dumb people can survive but there are evidence they procreate a lot more than smart people.
If dumb people survive and procreate more than smart people, and if intelligence is hereditary, the human race will become dumber.
I learned a lot about autism, cancer, and many causes (e.g. our food system, glyphosphate (weed killer), our sterile environment) from the endocrinologist and cancer researcher Dr Zach Bush on this podcast. Very fascinating stuff. http://www.richroll.com/podcast/zach-bush-353/
Though I often question if society should treat social deficits of autism even if such a treatment is effective without side-effects.
Another solution would be for society to be generally more neuro-inclusive. I can't help but wonder if there are synergistic benefits from being able to have different ways of experiencing the world.
(I don't have ASD; my step-daughter is on the spectrum).
Treatments should only be administered if the patient suffers themselves, if the patient actually suffers can however be hard to know at times. This can be a tricky balancing act, but one that I think we can figure out.
I would however like to see medications that treats, or are otherwise reversible. Especially for children we should not induce irreversible behavioural changes except possibly if absolutely required, or as a side effect of treating a dire life threatening condition.
Society is very difficult to change, and activist groups aren't pushing in that direction as a whole (Autism Self Advocacy Network is far smaller than Autism Speaks.) Drugs are easy to make acceptable as long as the medical establishment is ok with it.
Hell, not that long ago lobotomies were accepted by the medical community. This is the problem with conditions that place a heavy burden on the parents, there is an incentive to act against the best interests of the children.
This drug is naturally occurring and derived from a bacteria that is found in soil. Curious about a link between kids not playing in the dirt enough and autism.
Second, this drug is used to treat lymphoma. Surely their have been kids with autism who also had lymphoma who were exposed to this drug. Would be useful to look and see if there are cases of autism being cured along with lymphoma treatment (thanks to my mom, @DrJanetRose for that insight).
> Curious about a link between kids not playing in the dirt enough and autism.
I'm sorry, but it seems, you don't really know much about autism. It is not a disease which you develop over the years, because you have been not played enough in the dirt.
I certainly don't know a lot about Autism, you are right about that.
Since this drug is found in the dirt, I became curious if there might be a link between microbial exposure and autism.
I started to look and came across an article in the American Journal of Public Health that said the one of the biggest factors for risk of autism was urban vs Rural and that researchers speculated it may have to do with neonatal microbial exposure.
Maybe this can offer some hope for others with more profound issues, but if you’ve found a way to function in society I’m not sure this will be very attractive outside a “let me try and see what it feels like” scenario.