10 ms·

A Controversial Autism Treatment Is About to Become a Big Business

29 points by elsewhen 5y ago

eigengrau5150 5y ago
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.
- R0b0t1 5y ago
  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.
  - pengaru 5y ago
    > 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.
    - Y_Y 5y ago
      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.
    - TopRattata 5y ago
      I mean, no more dependent than a neurotypical person is on their naturally-produced neurotransmitters.
      - shkkmo 5y ago
        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.
        hirvi74 5y ago
        > 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/ https://pubmed.ncbi.nlm.nih.gov/25158998/ [2] https://www.sciencedirect.com/science/article/pii/S014976342100049X https://www.sciencedirect.com/science/article/pii/S014976342...
    - xxpor 5y ago
      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.
      - xxpor 5y ago
        Apparently my spelling and ability to proofread did not improve, however :)
  - orthecreedence 5y ago
    > 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.
    - monkeydreams 5y ago
      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.
    - hammyhavoc 5y ago
      Same experience in the UK. And much worse.
    - asdff 5y ago
      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.
      - orthecreedence 5y ago
        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.
- CalRobert 5y ago
  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.
  - shkkmo 5y ago
    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.
  - DoreenMichele 5y ago
    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.
  - hkt 5y ago
    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/ 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.
    - CalRobert 5y ago
      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.
      - 5y ago
nanna 5y ago
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.
- CalRobert 5y ago
  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.
- shkkmo 5y ago
  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.
- collegeburner 5y ago
  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.
  - nicoburns 5y ago
    > An autist probably will never be a salesman, for instance Good? We'd probably be better off with fewer salesmen in the world.
metalliqaz 5y ago
US universities are just on a mission to torch their reputations, it would seem
- panzagl 5y ago
  This is basically selling a treatment while it's still in clinical trials- how is that not illegal?
  - shkkmo 5y ago
    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?
    - elliekelly 5y ago
      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-access https://www.fda.gov/news-events/public-health-focus/expanded...
tomohawk 5y ago
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.
- eranima 5y ago
  Dunno why you would think that. Want to provide an example?
- shkkmo 5y ago
  It's not about science figuring it out. It is about selling scientifically unproven treatments to desperate parents.
bawolff 5y ago
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.
- PrincessJess 5y ago
  Better to try and do something than end up with a rart after doing nothing.
  - hdjjhhvvhga 5y ago
    This is exactly the kind of thinking these people count on.
  - nanna 5y ago
    Dispicable language. 'Rart' has no place on HN.
kypro 5y ago
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.
anotherevan 5y ago
“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
astronautjones 5y ago
great, thorough, and excellent journalism from a writer Thiel & his scumbag colleagues tried to destroy at gawker

29 points by elsewhen 5y ago

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.

R0b0t1 5y ago
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.
- pengaru 5y ago
  > 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.
  - Y_Y 5y ago
    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.
  - TopRattata 5y ago
    I mean, no more dependent than a neurotypical person is on their naturally-produced neurotransmitters.
    - shkkmo 5y ago
      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.
      - hirvi74 5y ago
        > 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/ https://pubmed.ncbi.nlm.nih.gov/25158998/ [2] https://www.sciencedirect.com/science/article/pii/S014976342100049X https://www.sciencedirect.com/science/article/pii/S014976342...
  - xxpor 5y ago
    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.
    - xxpor 5y ago
      Apparently my spelling and ability to proofread did not improve, however :)
- orthecreedence 5y ago
  > 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.
  - monkeydreams 5y ago
    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.
  - hammyhavoc 5y ago
    Same experience in the UK. And much worse.
  - asdff 5y ago
    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.
    - orthecreedence 5y ago
      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.
CalRobert 5y ago
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.
- shkkmo 5y ago
  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.
- DoreenMichele 5y ago
  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.
- hkt 5y ago
  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/ 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.
  - CalRobert 5y ago
    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.
    - 5y ago

nanna 5y ago

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.

CalRobert 5y ago
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.
shkkmo 5y ago
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.
collegeburner 5y ago
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.
- nicoburns 5y ago
  > An autist probably will never be a salesman, for instance Good? We'd probably be better off with fewer salesmen in the world.

metalliqaz 5y ago

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

panzagl 5y ago
This is basically selling a treatment while it's still in clinical trials- how is that not illegal?
- shkkmo 5y ago
  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?
  - elliekelly 5y ago
    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-access https://www.fda.gov/news-events/public-health-focus/expanded...

tomohawk 5y ago

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.

eranima 5y ago
Dunno why you would think that. Want to provide an example?
shkkmo 5y ago
It's not about science figuring it out. It is about selling scientifically unproven treatments to desperate parents.

bawolff 5y ago

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.

PrincessJess 5y ago
Better to try and do something than end up with a rart after doing nothing.
- hdjjhhvvhga 5y ago
  This is exactly the kind of thinking these people count on.
- nanna 5y ago
  Dispicable language. 'Rart' has no place on HN.

kypro 5y ago

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.

anotherevan 5y ago

“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

astronautjones 5y ago

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