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.
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.
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.
Perhaps this autism treating drug is like an anti-Ritalin: give up the intense focus, and in exchange get charisma and sociability.
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!
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.
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')
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.
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.
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?
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.
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.
What are the benefits?
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.
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.
For that matter, so were his closest friends.
The Deaf community have been handling a similar issue for a while — see for example https://en.wikipedia.org/wiki/Cochlear_implant#Criticism_and...
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).
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 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"
And I imagine that's what anyone older than a young child would do.
If coffee makes it so you can't sleep, don't drink coffee.
If he was unable to speak I consider medication.
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.
Here are the relevant threads:
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.
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.
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.
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.
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.
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).
Like the Borg, cancer adapts. That's why it's called the Emperor of all maladies: http://www.pbs.org/show/story-cancer-emperor-all-maladies/
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.
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.
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.
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.
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!)
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.
I'm just playing the devil's advocate.
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.
Sure there is.
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?
> 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.
That's evolution, dude.
The above mentioned study links raising HDAC2 to reverse effects of Alzheimer's disease.
I doubt that the autism study with mice really 'cured' autism. I think the cancer drug reduced cognitive abilities, so mice seemed to react 'normal'.
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).
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.
Plus, he just won his school prize for Year 9 EMITS (STEM) so not sure why I would want to mess with what might make him like that.
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).
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.
You born with it.
Also, there is no known 'cure' for autism.
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.
AUTISM AND URBANIZATION
I spoke with an SF biohacker doctor friend who said that autism "for certain” was connected to the microbiome.
I don't claim to be an expert, but my curiosity is certainly leading me to some new personal discoveries about Autism.
Cause from where I am standing we are all on the spectrum but where are people and when is even worth talking about the spectrum.