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Gaming the search for autism treatments (spectrumnews.org)
31 points by chc2149 7 months ago | hide | past | web | favorite | 16 comments

I have autism and dyslexia and I wouldn't change it for the world. That said, I understand autism varies a lot person to person so I can only offer my experience.

For me my problems in life have never been a result of my autism or dyslexia, but a result of how people expect or want me to be.

I won't go into details, but I know I'm pretty smart and I've achieved more than most people I know largely because of my autistic obsession with anything I'm passionate about. However I've also found my professional life to be extremely hard now I'm at a more senior level in my career. I can't communicate well. I hate social interaction. People often think I'm rude because I don't ask how their weekend was or make eye contact. And on occasion I can come across mean and cold without meaning to do so because find it difficult to empathise.

I lost a job a few years back because of my autism and over the course of my career I've been rejected from countless positions because of my poor communication skills or being "a bad culture fit".

I'm not bad at all communication though, I'm fine explaining things with text, diagrams and examples. Plus, I'm a really good developer. But non of that ever seems to matter. Sometimes I wonder if it is even me with the problem, or if it's really that people have a problem with me and how I work.

Who cares if I'm not overly social? I've never minded it. I quite like being non-verbal and obsessive honestly. But I guess I can understand where neurotypicals are coming from to some extent. Sometimes I wish more people were like me too. Sometimes I wish I could treat people who think talking about their weekend or celebrating the birthday of a colleague they dislike is more important than doing something productive. But you know, I also appreciate not everyone is like me, or needs to be just like me to be worth a damn.

Perhaps I'm just venting. I understand some autistic children are completely not functional and need some help. It just upsets me when people think autism needs treating because it's probably the thing I genuinely love the most about myself.

You sound like a fairly self aware person. I’m curious - have you considered practicing social skills like making occasional eye contact, etc? Speaking as someone with enough “issues” (ability to concentrate deeply, socialization issues, awkwardness around eye contact) that I could apply the autism label to myself if I chose to.

The reason I choose not to label myself this way is that I’ve learned to overcome many of my old hangups like avoiding eye contact. It’s true what you say about it holding back your career. When I decided to set out as an entrepreneur I was pretty much forced to up my game in this area. So I did. I can still relate to anyone who struggles with these skills, but I also know it’s possible to overcome them.

Somewhere way deep down I’m still a shy awkward dev, but I’ve gotten good at enough at being charming that I can close angel and VC deals. At this point I’m not even sure if the “real me” is the awkward one. Maybe my true nature is gregarious and unafraid, and I only learned how to retreat into my shell as a defense mechanism against chronic childhood abuse, which I’m finally coming to terms with after a solid 20 years of confusion.

Anyway, I wish you’d best of luck and I encourage you to challenge yourself (safely) - I really wish more knowledgeable devs would feel empowered to learn these skills and take on higher level business roles. If you don’t do it, all the leadership positions end up being taken by people who are good at being charming but not much else.

> The reason I choose not to label myself this way is that I’ve learned to overcome many of my old hangups like avoiding eye contact. It’s true what you say about it holding back your career. When I decided to set out as an entrepreneur I was pretty much forced to up my game in this area. So I did. I can still relate to anyone who struggles with these skills, but I also know it’s possible to overcome them.

While I'd say I also have had some success overcoming my struggles with autism, I think "it's possible to overcome them" is a bold and possibly harmful claim. Depending on the particulars, this might very well not be possible for some people with autism.

Another important point, I think, is that there's a difference between 'overcoming' and 'managing' autism-related issues. I consider myself very lucky that I've learned how to blend in well, but one downside I've found is that no matter how well I am able to act normal, my being often isn't, and doing too much of the acting can be exhausting, anxiety-inducing and even harmful. Figuring out how 'far' to go in this regard, and when to turn on the 'normal scripts' is one of my main goals.

That said, I do agree that practicing and not putting too much weight on labels can be helpful!

I think I came across as a bit of a "victim" in my comment, but the attitude you've described here is very much how I approach life.

You can definitely learn social skills, and almost anyone who wants a good career needs to have at least some ability to hold a conversation and be approachable. That said, if you're sufficiently on the spectrum you're probably never going to pass as "normal" but you can be good enough.

I guess what upsets me is that I feel like to be successful I have to be less myself. I think you might feel this too based on what you said:

> At this point I’m not even sure if the “real me” is the awkward one.

So yeah, I do try my best to improve. I have to if I want what's best for the people I love. But I often wish I didn't have to and society would work around my communication preferences instead for a change. There are certainly days I get tired of being someone else and think screw it for better or worse, but I think I'm getting a little better at it every day.

> I guess what upsets me is that I feel like to be successful I have to be less myself. I think you might feel this too based on what you said

Actually, my point was the exact opposite. The "awkward me" isn't the real me. It's the version of myself that I constructed in order to survive my seriously dysfunctional childhood raised by a mother with a PhD from Harvard in child psychology who was deliberately trying to interfere with my socialization. For example, making me skip a grade, I was a small kid, so I ended up in junior high a foot shorter than all of my peers. Another great example is making me take a job closing down a pool from 9-10pm every night during high school, with the express purpose (unknown to me) of ensuring that I wouldn't be able to hang out with friends at night.

My point is, my entire sense of self had been constructed for me, but it was a false one. After many years, a deeper version of myself has emerged, one that's more true in some sense. From the perspective of my old self, this new self is "fake", and vice versa. Based on the available data, I've concluded that the real me is actually just fine, and all I needed to do was a few decades of therapy/yoga/psychedelics/meditation/breakdowns in order to come out of my shell.

In your case, I would be careful about wishing that society would work around your communication preferences. If by preferences you mean "I want to be able to violate social norms around eye contact and politeness and get away with it", then I'd say it would be more constructive for you to change, rather than society. I'd also note that if you're in a position of power, like someone's boss, or even the prized developer, this puts you in a privileged position to break social norms because there's a risk to whoever dares to call you out. Don't be one of those bosses, or one of those developers.

> But I often wish I didn't have to and society would work around my communication preferences instead for a change.

To me, this echoes an under-emphasized concept when discussing freedom and democracies, and things like free speech in online forums and search engines: the danger of "tyranny of the majority".

It also underscores the importance of true diversity, diversity of thought, which can include forcing oneself to think differently by, for example, working around the communication preferences of the minority.

One of the perks of autism/asperger is the obsessive focus on things that interest you. One important distinction between someone that is just naturally shy are problems with empathy.

You can fix some non-verbal communication aspects but it is better to invest in listening skills. By listening to what others are saying you can relate better and increase your likebility.

I disagree that you can "fix" people in the autism spectrum. It just is not cost effective and most will never feel good in business roles. Most will be natural born experts where most business roles are jacks-of-all-trades.

At least for me I've learned all these things but it can be so mentally taxing that I have a hard time doing it.

There is a lot to be said for the neuro-diversity argument and movement, the support for which I think has been driven in part by the broadening of the phenotype to those that are less severely affected. For those that are severely affected, ASD can be devastating, including completely disabling anxiety and phobias, extreme sensory sensitivity, low verbal ability and/or IQ, elevated depression and suicide, increased rates of homelessness, and so on. Those are the people that really motivate me in my research.

Yeah, aside from phobias I have all of those.

I didn't know anxiety and depression was linked though? I have severe anxiety, much worse than anyone I've ever met. At times dealing with that has been equally as challenging for me. My depression can get pretty bad too although that seems to have eased up a bit over the last couple of years.

Sensory sensitivity is something I experience. I feel unbelievably angry whenever I hear loud or tinny noises, but thankfully I can mostly control that. People think I'm strange for always carrying earplugs and wearing them in public, but I've found it really helps to relax me in busy / noisy situations.

Could you comment on how is IQ linked, I'd be really interest if you have some more information? Is it normally negatively, because I've heard people on the spectrum often score higher on average? I've had IQ anxiety for a while now because on one hand I know in many way I've been very competent in life, but on the other hand consistently struggled when it comes to the most basic tasks. I took a Mensa IQ test a few months back and scored 132 which I think may actually be on the lower end because of how language heavy Mensa's tests are.

I'd say that median IQ in ASD is very similar to non-ASD, but the mean is much lower in ASD. That is because a sub-population within the ASD spectrum have very low IQs (e.g., 40-60 being very common). One difficulty with all of this is saple bias. Most studies only deal with higher functioning ASD because low-functioning ASD can be challenging to study. Early on, ASD tended to be only diagnosed in more affluent families, so that could bend IQs upward too in samples.

Its a spectrum, and sometimes there is intellectual disability, and sometimes the impact on quality of life minimal or just different. In others no sign of it at all. If you've met one person with autism, you've met one person with autism. Its all very challenging,a nd why there is so much effort being applied to trying to define phenotypes.

This is what happens when the same term is used for different conditions. Imagine if someone put forth a cure for lupus (an autoimmune disorder), but lupus was called "immune system disorder", and people replied "my immune system is one of my favorite parts of myself! I don't mind getting a fever occasionally."

Going back to the article, whose details you might have overlooked in your first read through.

> In the trial, 42 children with autism who played the games for 20 hours got better at recognizing facial expressions and at related tasks.

Would being able to recognize faces harm your self-identity and quality of life?

> The players who made the most progress in the game also showed the greatest improvements in their balance,

>The researchers are assessing whether the players also improve their posture and balance while getting dressed.

Would being able to balance on your feet and dress yourself be harmful to you?

> aims to improve various aspects of attention, especially cognitive control, or the ability to juggle different tasks and ignore irrelevant information.

Would being able to ignore unwanted distractions hurt your productivity?

> but lupus was called "immune system disorder",

Well, worse than that, even.. it would be like "immune systemism" (with "disorder" being implied). The ambiguity and implication in the article's title is very unfortunate.

As you point out, what the article documents as being treated is not autism itself (which may not even be a single "thing"), but, rather, specific disorders that are strongly correlated with what is identified as autism.

More importantly, though, the treatments all seem (admittedly subjectively) like empowerment and skills training, and less like brainwashing or coercion into "normal" behavior.

I would hesitate to call you autistic if your only symptoms are poor eye contact and social interaction. It just seems like a burdensome label for problems that anyone could have. I don't know your situation, but if you can get past the label, then maybe you can get past its effects!

Luminosity and the like very well could have failed or had limited effect because brain plasticity is reduced in adulthood. While there are no medical treatments or cures for ASD, the one known effective treatment to improve quality of life outcomes is early behavioral intervention near the age of diagnosis (i.e. 2-4 years of age).

I am a higher functioning case admittedly but I find that it seems to auto-correct some in the slow way via learning and workaround development. I suspect that having higher functioning adult autistic tutors could be useful.

On another note I have found that ironically my empathy is better than many neurotypical individuals falling way short in both compassion and comprehension of how others would react. Like wondering why their child is acting out when they are literally acting like an antagonist in a young adult dystopian novel (of the overly controlling as opposed to made to fight to the death for fun and profit variant).

Hell look at sesame credits - that looks tailored to create a rebellion and lead to a bloody purge of the high credit elites down the road. There was even an apocryphal old story about the Roman Senate considering requiring slaves to wear collars in public at all times until they did the math and realized it would let them know they vastly outnumbered them.

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