A Controversial Autism Treatment Is About to Become a Big Business | Hacker News Reader

A Controversial Autism Treatment Is About to Become a Big Business

vice.com

29 pointselsewhen62 comments

“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.”

― Temple Grandin, Thinking in Pictures, Expanded Edition: My Life with Autism

Wtf, how is it legal to charge people thousands of dollars for a medical treatment that has no evidence it does anything.

Seems like the worst kind of predatory business.

Better to try and do something than end up with a rart after doing nothing.

This is exactly the kind of thinking these people count on.

Dispicable language. 'Rart' has no place on HN.

I initially wrote out a rather long comment in response to this expressing my anger and frustration with how people on the spectrum are treated by neurotypicals, but I'm not sure it was very productive.

I guess I just want to say that this upsets me. I don't want to stop the research and I don't blame the parents, but I wish the world was more accepting of us sometimes. My whole neurotypicals have hurt me with their total disregard for the way my brain thinks and acts, yet somehow it's my fault for being like this.

Perhaps one of the more well known examples of this is what happened to James Damore. He got fired from Google for providing his honest feedback to Google's diversity program after they explicitly asked for feedback. But who's fault was it that he took their request for feedback in good faith and was fired by bad actors? His of course. I bring up this example because this is exactly how I've been made to feel throughout my in life. Whether it was when I was in school and getting detention for questioning religious teachings, or at home where I was disappointing my parents for not being the neurotypical boy my parents wanted, or at work when I'm saying the wrong things or sharing opinions that are not permitted.

A few years ago I was fired from my job and I'm almost certain this was because other people in my team expressed that they felt awkward around me and that I didn't fit in. I was there for years and I thought of these people as my friends. It hurt me and confused me so much that after this I struggled to find employment for about a year and I ended up becoming extremely depressed and self medicating with alcohol.

I'm not trying to blame anyone. I get I'm awkward and why people wouldn't want to be around me. But it just hurts because all I want is for people to like me. I spend so much energy every day just trying to be liked, but rarely will anyone do the same for me. It's sad because people on the spectrum tend to be very loyal. We seem to naturally develop very deep connections with the people around us and it hurts a lot when we're rejected.

In the same way we can't build the world around left-handed people, I accept we can't help but live in a world with neurotypical social norms. All I'm asking is you make a little room for us. A lot of us are pretty smart and although we can be a bit weird we don't mean any harm. It's just hard trying to simulate being a normal human 24 hours a day. In the same way left-handedness isn't a disease, I don't think I am either. I know some people are not as fortunate as me and in those cases treatments like this could really help, but a lot of us just need a bit of space to be different rather than to be treated. When I'm on my own or with my partner who understands my quirks, I've never felt I'm at any disadvantage at all.

I'm glad I didn't get diagnosed until I was an adult. It means I don't have to worry about my parents subjecting me to shit like this and applied behavior analysis (ABA) therapy.

Like with ADHD, the benefit of a diagnosis is usually more 1-on-1 time with a teacher, which leads to better scholastic outcomes regardless of if the underlying issue is truly present.

> Like with ADHD, the benefit of a diagnosis is usually more 1-on-1 time with a teacher, which leads to better scholastic outcomes regardless of if the underlying issue is truly present.

My observation has been that usually diagnosis results in dependence on amphetamines.

Dependence on medicine to treat a chronic condition? If you "depend" upon something to seriously improve your quality of life, then that's hardly so bad.

> After his mother's death in 1971 he started taking antidepressants and amphetamines, despite the concern of his friends, one of whom (Ron Graham) bet him $500 that he could not stop taking them for a month. Erdős won the bet, but complained that it impacted his performance: "You've showed me I'm not an addict. But I didn't get any work done. I'd get up in the morning and stare at a blank piece of paper. I'd have no ideas, just like an ordinary person. You've set mathematics back a month." After he won the bet, he promptly resumed his use of Ritalin and Benzedrine.

I mean, no more dependent than a neurotypical person is on their naturally-produced neurotransmitters.

Although purely annecdotal, I've seen a close personal friend with ADHD develop severe abuse issues with their prescribed medication. I don't have data on how high the risk is, but it does exist.

> I don't have data on how high the risk is, but it does exist.

While addiction can occur in anybody, the data seems to support the opposite conclusion^1 in regards to ADHD people and addictions to prescribed stimulants. Though a simple search on the topic can yield you many other sources citing the same observations.

In fact, people with ADHD are far more prone to developing addictions if ADHD is not treated properly. In an elementary way of thinking, the ADHD brain craves dopamine. So, in a sad way, the options for many ADHD people are:

1. to acquire their dopamine through the care and monitoring of licensed and trained medical professionals => improving their life.

2. to acquire their dopamine through whatever means works for them, typically the ways of boosting dopamine are quite dangerous, unproductive, inefficient, etc.

The average person is either ignorant or refuses to admit that ADHD psychostimulant medications are by far one of the most well researched and well understood medications ever utilized in medicine. This might sound a bit alarming for those unaware, but it's actually hard to find a medication that has this large of an benefical effect with so few side-effects in the large majority of individuals who use them properly.

Speaking of dangers, almost no one ever mentions the dangers of a person with ADHD going untreated. If you want to learn more, I would recommend you read points 78 - 136^2.

[1] https://pubmed.ncbi.nlm.nih.gov/25158998/

[2] https://www.sciencedirect.com/science/article/pii/S014976342...

That's what my parents tried to avoid for the first 15 years of my life. Finally, in my junior year of HS, they relented. My live improved 1000% overnight.

There's a reason why they're used. Because they're effective for the vast majority of people.

Apparently my spelling and ability to proofread did not improve, however :)

> Like with ADHD, the benefit of a diagnosis is usually more 1-on-1 time with a teacher

Funny, they wanted to put me on Ritalin, not give me more 1-on-1 time.

Same experience in the UK. And much worse.

I wish I had a doctor who wanted to get me on ritalin when I was younger. Everyone I know who had been prescribed has sung praises even still today well out of schooling.

The thing is, I didn't have ADHD, I was just kind of rambunctious (and said the word "butt" one too many times, apparently). It was being used as a "I'm too lazy to teach" remedy, which was of course my fault, not the teacher's.

Luckily my parents laughed at the idea and thus the poor teacher had to actually do her job: teach kindergartners, not child-shaped vegetables.

I wish I had been on ritalin at school. As an adult I have found my ability to retain, recall, and communicate information is so much stronger when I am on ritalin than when I am not. But, alas, I was not and here I am, decades later, trying to decide whether the expense of gaining a degree would be repaid with my remaining years in the workforce.

That's interesting, can you elaborate on your qualms with ABA? After my sister's belated diagnosis around 1990 (it was still quite rare compared to the present) my mom became an ABA practitioner (eventually getting a PhD). Sister went from completely non-verbal to speaking well, which was remarkable considering that there were professionals saying she'd always need to live in an institution. As best I can tell ABA made a huge difference for her.

ABA is sometimes used to force autistic children to behave more normally in a way that's detrimental to them. For some kids, the end result is they become an easy mark for abusive behavior.

My son's speech therapist described ABA as horse breaking, and the (way more humane) approach she uses as horse whispering. The approach she uses is JASPER: https://pubmed.ncbi.nlm.nih.gov/34348479/

Edit: a part of the criticism I've heard for ABA is that it doesn't generalise, so kids know how to function only in a very limited set of circumstances and are often frozen with anxiety outside of them. It is also an all consuming lifestyle for the whole family.

That's definitely true re: all consuming. It literally became my mom's entire purpose, and from the moment she woke up to the moment she went to bed she was working to get her daughter to talk.

I'm in a similar mindset but won't do ABA - my son is minimally verbal but has come along at a gentle pace since we started. I'm quietly confident that just engaging him and building his joint attention will do the right thing.

ABA was significantly better than what came before it for treating many low functioning individuals with ASD. That doesn't mean that there aren't now better alternatives or that it was ever well suited for the entire spectrum.

> That's interesting, can you elaborate on your qualms with ABA?

You mean aside from thinking that I shouldn't have to change my behavior for the convenience of others as long as I'm not breaking the law or making a public nuisance of myself?

I'm not interested in pretending to be "normal" for the sake of neurotypicals who don't give a fuck about me. I do more than enough of that at my day job just to be seen as "employable".

Never mind masking because of COVID; I've been masking because of autism my entire life[1] and I'm getting sick of it.

Autistic people don't need a cure or treatment that only makes life easier for neurotypicals. Neurotypicals can go fuck themselves.

[1]: https://www.tiimoapp.com/blog/masters-of-masking-autistic-me...

great, thorough, and excellent journalism from a writer Thiel & his scumbag colleagues tried to destroy at gawker

vice.com is not a reputable source of medical advice.

There's a lot that is still not understood about autism. We don't need to get our pitchforks out while the science tries to figure this stuff out.

It's not about science figuring it out. It is about selling scientifically unproven treatments to desperate parents.

US universities are just on a mission to torch their reputations, it would seem

This is basically selling a treatment while it's still in clinical trials- how is that not illegal?

I was also confused about this. The article doesn't discuss any regulatory approval process. Does this treatment somehow fall under one of the categories where that is not required?

I think it’s the “Expanded Access Program”[1] they mentioned at the beginning of the article but I struggle to see how that would really apply to autism?

[1]https://www.fda.gov/news-events/public-health-focus/expanded...

Horrific. Autism is about neural difference not deficiency. The problem is neurotypical societies pathologising and disabling neurodivergent people. What this article discusses is analogous to treatment for homosexuality. Shame on you, Duke university.

It is more complicated than that. On the "milder" side of the spectrum that is certainly true. On the severe side of the spectrum there can be significant cognitive deficiencies that impair an individual from living the life they desire. There is nothing wrong with creating tools to help ameliorate those deficiences as long as the goal is not to "force them to be normal" but rather to give them tools to help them realize their potential unique and valuable abilities and perspectives.

Edit: This does appear to be a money grubbing attempt to capitalize on poorly informed and desperate parents rather than an attemot to create tools to empower individuals with ASD.

What a load of nonsense, autism is a horrible thing that should be entirely eliminated if possible. An autist probably will never be a salesman, for instance, we should make that not the case if we can because otherwise those opportunitues will stay off limits because of some peoples birth. Then there are the more severe cases where people cant speak and care for themselves. Thats not a society issue, thats a birth defect and working to fix it is good.

> An autist probably will never be a salesman, for instance

Good? We'd probably be better off with fewer salesmen in the world.

So what, deprive these kids of the possibility of choosing something? Why not give them the choice?

Let them become adults, and if they want to later inflict neurological damage upon themselves, then fine. But don't neglect them treatment.

Autistic people also often have capabilities that neurotypical people don't. So treating them would also be denying them opportunities. I think any treatment would have to be taken on a case by case basis. This particular one sounds like it doesn't work anyway.

Blind people also have capabilities that sighted people don’t have.

Give the kids the treatment. If they want to choose later in life to blind themselves, fine, they’re adults. Don’t make them part of a crusade that they didn’t consent to.

I say this as somebody who had several major surgeries as a child to save my eyesight.

> I say this as somebody who had several major surgeries as a child to save my eyesight.

The moral calculus here depends on how severe the impairment is and the potential risks / harms associated with the treatments.

At one end of the impairment/risk ratio, it is certainly ethical. Somewhere in the middle, I think you need to obtain the minor's consent. At the other end the treament isn't ever ethical ever to conduct on a minor.

What if the "sight saving" treatment has a high risk of them losing their sight at an older age when developing the abilities to navigate as a blind person are harder?

The issue here is an ongoing debate about which ASD differences are impairments (and about the severity.) and which are just stigmatized. I think to make this determination ethically you MUST listen to the range of opinions from adults who faced similar situations. If there isn't a clear consensus, I think we should be hesitant to impose treatment without consent.

Is it "horrific" or comparable to gay conversion therapy to make sight-saving treatments available?

I picked it as a single role that requires lots of customer interaction and social cues, it could be lots of stuff, customer service or others. That was just 1 example.

As an autist who's done sales (yes, I hate it, wouldn't ever choose that career), this is bullshit. I have adhd(inattentive, formerly ADD) and am high level on the ASD specrtum.

Sure, my life gets fucked up a lot by my brain over analyzing things, or hyper focusing or just not focusing on anything at all, and I miss a lot of queues from loved ones, associates, etc.. but I also have movments of genius that everyone else seems to lack, I have passions in things and see stuff others miss.

When I'm on my ADHD meds, I mostly function okay, my executive function even works a large portion of the time. Could I be more successful? Certainly, but do I feel like I'm missing out on opportunities because of it? Nah, not at all. I also didn't know I had ADHD or Autism till i was 38, I just basically learned to cope in life as a normie, but learning has given me just some extra tools to become a bit better at coping through the hard stuff in life.

Ok Im glad you were able to do that and that you can still have a good life. If we could fix it though, more opportunities would be available, maybe you'd have enjoyed it and could have it as a career you liked. There are also a lot of other people not so high functioning that literally just couldnt, and others who can't even live on their own as adults. Maybe you dont need a treatment like this but there are people where it would change their lives.

And what if in the process if making everyone "salesman material" we divert a potential "weirdo genius" from making a much larger contribution?

Diversity is important and valuable. I highly doubt that ASD (and our cognitive diversity in general) is an evolutionary mistake.

That isn't to say that we shouldn't make tools and treatments available, but it absolutely does mean we shouldn't insist on "fixing" everyone with ASD.

I guess my phrasing wasnt clear, I wasnt talking so much about "weirdo genius" level of function but more people who just cant function well. Theres a level where some people are very good at certain things but not so sociable, more like Aspergers disease, thats fine and caused by more stuff than just autism. Its when it starts preventing people from doing basic function, caring for themselves, holding basic conversation that it becomes a problem.

I think this is an area where our choice of words and efforts to speak clearly are especially important.

Empowering people is very different than fixing them.

So you're saying society needs more Salesmen, less Einstein's and Alan Turings? Wonder how ww2 would've fared without them.

The most successful salesperson in the world Mark Zuckerberg has some form of mild autism, in my opinion (which is shared by some Facebook employees and on autism forums).

He sold the world and the investment community that he's selling communication while he's really selling digital crack cocaine.

Pretty sure Elon Musk is ASD too, I'm ASD (slightly, self-diagnosed my wife has ADHD-C, I WAS diagnosed with ADHD-I 3 years ago, and after MANY youtube channel watches of ASD and ADD/ADHD stuff, and being told by 3 separate friends (all w/ ASD) that if they've got it, so do I, I just accepted it).. .

It does make sense, I ramble often, on a topic and I can get so focused on one subject that I neglect everything else for weeks, and sure that's a sign of ADHD, but it crosses over, my brother has it too, and I think my wife does as well, cause there's a female YT channel on it, and she and the host are like twins (behaviorially)...

I'm not a fan of Zuck or Musk (used to be a fan, but he's just a self-absorbed rich kid who got lucky because he had money to begin with), but I do see ASD as a two edged sword it can lead to greatness (I have brilliant ideas) or failure (I have fear of launching, because I'm very sensitive to criticism, and rejection) .. but having access to money makes fear of failure less because well you can afford better market testing, and hire people to help fill in the gaps...

TLDR: Not a fan of elon/zuck, both probably are ASD, so am I, my take is it didn't make them successful, it may have contributed, but it definitely didn't hurt them either, but people w/ ASD often get paired as being like the guy on the "Good Doctor" and I hate that, many w/ ASD you can't even tell until they tell you or you work in close quarters w/ them for awhile... it's not very pronounced on a lot of people and most programmers probably are on spectrum, it's a good career choice for us (almost perfect)... I'm one.

Lots of people won't ever be suited to being a salesperson. This is a horrible justification for attempting to eliminate neurodiversity.

I have a friend who has autism and he’s a fantastic salesperson because he just takes potential buyers at their word. You’re not the market for a car? Cool. Give him a call when you are and in the meantime let him know if you have any questions. And he genuinely means it.

That car is too expensive? Well what’s your budget? He’ll tell you right away whether he can make the numbers work with that model or he’ll show you the next best thing you can buy for that price range.

Is he the stereotypical slick sales guy? Not at all. But he sells lots of cars because he’s really good at what he does and, more importantly, customers really like working with him.

To take your argument even further:

It is good to have more than one type of salesperson. Some customers like/respond to one approach and some don't. Having a cognitively diverse salesforce should make your sales unit stronger and more flexible.

Monocultures are fragile and inflexible.

Horrific? I have friends whose children are almost completely non-verbal, who require full time state funded caregivers to live with them, and who will likely never be able to live on their own due to their severe autism.

Yes. That is deficiency. Nobody on earth would choose that. Suggesting otherwise is abusive and to use your words horrific. Do not make these children martyrs in whatever stupid war you are trying to fight here.

agreed. I was taken aback that the first issue in the article being discussed is efficacy rather than ethics concerning the rights of the autistic child in question. Autism is not merely a disease and the question whether these treatments infringe on the identity of a person should be paramount before anyone is subjected to them.

That always struck me as an odd black and white argument. It's a lot like the Capital 'D' Deaf community. Yes, it can be a part of your identity, but to some, it is legitimately just a disability; an impediment in major life functions.

Not everyone on the autism spectrum can even function, let alone function in society. Not everyone who is neurodivergent can function in society.

Some can, sure. But for those that cannot, a treatment that works would be a god-send.

No, it’s is literally a deficiency. It is the metabolic latency of parts of the brain. It’s having parts of your brain turned off.

It's a spectrum, right there in the name. People with severe autism often can't even speak. My sister didn't say her first word until she was four. Watching my own just-turned-four daughter go on at length about her day and tell stories, I can't imagine my mom's fear.

"It is estimated that 25% to 50% of children diagnosed with autism spectrum disorder (ASD) never develop spoken language beyond a few words or utterances."

https://en.wikipedia.org/wiki/Nonverbal_autism

Trying to help these mute children gain speech. Horrific.

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