6 ms·

The argument over a long-standing autism intervention

40 points by jyunwai 3y ago

SV_BubbleTime 3y ago
> Hammond is now the mother of two autistic sons. An autistic autistic-advocate has two sons and they are both autistic? What are the odds of that? Is there some genetic hand down I’ve never heard of?
- tacheiordache 3y ago
  So you're saying autistic people should not have children?
  - xyzelement 3y ago
    I think he's just probing the improbability of this scenario absent a genetic component (which wouldn't be surprising to me if there was - is it asserted that autism is non-genetic?)
  - mass_and_energy 3y ago
    I mean, I'm autistic and will adopt instead of having biological children for that very reason. I'm high functioning and still had a cursed childhood owing to it. I wouldn't roll the dice on bestowing that on anybody, let alone my kin. I realize that's a pretty hot take to many people but as someone that dealt with the best-case scenario of the disorder, this isn't something any kid should have to deal with.
    - jprete 3y ago
      I'm willing to take the risk if the opportunity shows itself. But I've spent so much time understanding what the disorder did to me that I think I could teach my child the things that took me so long to learn.
      - mass_and_energy 3y ago
        That's a fair point, and a good way of looking at it. My biggest concern, to be honest, is that they'll be low-functioning and it'll be because of the hand I chose to deal them. The thought alone is haunting
    - the_sleaze9 3y ago
      I find this inspiring - truly an example of heroism and bravery. Bravo.
  - jknoepfler 3y ago
    The specific questions asked were "what are the odds of that?" and "is there a genetic component?" The answer to the latter is "yes", which although unquantified in the responses, at least intuitively changes baserate assumptions. I'm not sure how one draws a normative assertion out of the questions, implied or otherwise.
- pushcx 3y ago
  Yes, it is highly heritable: https://en.wikipedia.org/wiki/Heritability_of_autism https://en.wikipedia.org/wiki/Heritability_of_autism
- lawgimenez 3y ago
  Can you elaborate on your comment? A lot of autistic advocates have autistic children.
- epcoa 3y ago
  Heritability of ASD is pretty widely accepted and mainstream for years (family history listed as number 1 risk factor on Wikipedia). https://pubmed.ncbi.nlm.nih.gov/26709141/ https://pubmed.ncbi.nlm.nih.gov/26709141/ Science is long past if it is heritable though and onto why. https://www.pnas.org/doi/10.1073/pnas.2215632120 https://www.pnas.org/doi/10.1073/pnas.2215632120
- purpleblue 3y ago
  If your first child is autistic then the chances of your second child being autistic skyrocket to well over 50%. The problem is that a lot of autistic symptoms don't show up until you've already had your second kid.
zeroonetwothree 3y ago
https://archive.ph/GONJV https://archive.ph/GONJV
- YeGoblynQueenne 3y ago
  Or rclick on the annoying pop-up, inspect and delete this div and its contents and the annoying pop up goes away: <div id="onetrust-consent-sdk"> P.S. No, OneTrust, you don't care about our privacy.
_fat_santa 3y ago
I think generally we have turned a corner on Autism where it's moved from being viewed as a disease one treats to just how someone is. I think of it in terms of alignment, we used to try to "align" someone with autism with the way society works but now rather than trying to align the person, we instead align society to the way the person is.
- jprete 3y ago
  I think it's a terrible approach. I'm on the spectrum myself and my own autistic tendencies clearly hurt me and others around me. I also get intensely frustrated and sometimes hurt by actions that look very much like they came from the autistic traits of others.
  - CooCooCaCha 3y ago
    I’m also on the spectrum and I’ve been hard on myself in the past. But I’ve realized that a lot of the stuff I saw as negative was really just me comparing myself to “normal” people and interacting with a world built for normies. There are a lot of people that get me and like having me around. But I’m never going to be understood by neurotypical people.
- bittercynic 3y ago
  First-hand experience. I suspect I have ASD. With the help of some very kind friends and coworkers, I've learned to to a passable imitation of normal in many circumstances. For example, the clerk at the supermarket probably doesn't know, unless they try to share friendly banter with me. Having emotional reactions that are way outside "normal", and generally having a below average ability to understand the thoughts and feelings of others causes major inconveniences. Being socially odd leads to accidentally hurting people's feelings, and being perceived as erratic and unpredictable. Sometimes I can pick up on social cues relatively normally, and other times I'm way out in left field, so I must be choosing to behave this way, right? I wouldn't necessarily want to just be normal and average in every way, but it would sure be convenient to have normal, average, social capabilities.
louwrentius 3y ago
Roughly speaking, there are two categories of autistic children. The therapy is focussed on autistic people who need care 24/7. The therapy doesn't seem to fit autistic children who are verbal but have issues with social skills. The latter group had some bad experiences with this kind of one-size-fits-all therapy. But the argument is made that the therapy isn't totally inhumane/worthless as it does help 'severe' autism cases.
- resoluteteeth 3y ago
  > Roughly speaking, there are two categories of autistic children. The therapy is focussed on autistic people who need care 24/7. The therapy doesn't seem to fit autistic children who are verbal but have issues with social skills. > The latter group had some bad experiences with this kind of one-size-fits-all therapy. But the argument is made that the therapy isn't totally inhumane/worthless as it does help 'severe' autism cases. That makes sense, but the article seems to imply that a lot of this therapy is focused on correcting "traits that may be socially stigmatizing but are harmless unto themselves, such as fidgeting, avoiding eye contact, or stereotypic behaviors commonly known as stimming—rocking, hand-flapping, and so forth." I can't imagine that spending a lot of time correcting minor, harmless, socially unacceptable behaviors would be that beneficial for nonverbal people who need 24/7 care, and if it is seen as inhumane or worthless for "autistic children who are verbal but have issues with social skills" perhaps it needs to be revamped to focus on the parts of it that are useful for more severe cases?
- hooverd 3y ago
  And from the article, it doesn't help that the pioneers of ABA had roughly the same compassion for their subjects as Josef Mengele. Ze beatings will continue until the social skills improve (and we get rid of the homosexuality)!
  - bitwize 3y ago
    Funny you should mention Mengele: it's come out that Hans Asperger was a Nazi sympathizer, and had some of the worst cases of children with autism-like symptoms sent to Spiegelgrund to be killed because he couldn't train them to conform to the Nazi collectivist ideal. We on the spectrum have had to deal with the cruelty of certain doctors and therapists when it turns out we don't fit into their Procrustean beds since we were first identified. Asperger's counterpart Leo Kanner, also an Austrian, helped Jewish doctors escape the Nazis to the USA. So he's... kind of a hero.
smeej 3y ago
I can't help but wonder if there's something about the tendency to black-and-white thinking characteristic of autism that makes it hard for people on one end of the autism spectrum to appreciate that the experiences of people on the opposite end might be very different from their own. My sister was a special education teacher and had a theory about autism that she described with a metaphor. Imagine riding a tricycle. Neurotypical people are along the fairly limited spectrum of "healthy children riding tricycles." Some are a little better or a little worse, but most can do it, and the skill variation isn't that high. People on one end of the autism spectrum are more like adults trying to ride a tricycle. They're too big, too powerful. It doesn't work now, but if they try really hard or come up with creative workarounds, they can sort of do it. People on the other end of the autism spectrum are trying to ride a tricycle with a jet engine attached. There's way too much power. The tricycle can't handle it. There's no way to ride the tricycle with a jet engine on it that will even vaguely resemble a child riding a tricycle. Maybe if you're an adult riding a tricycle, you can argue you don't need help. You'll come up with something. You might have to ride with your knees over the handlebars, but you'll still get where you're going. It would just help if people would leave you alone and stop staring at you while you do it. But if you're trying to navigate a jet bicycle, that's not really going to help. You might need really severe intervention to keep you from crashing and hurting yourself. Maybe that's picking the trike up off the ground or something so at least it's not crashing, even if the heat is still a lot to handle (it's a metaphor; it's not perfect). Might it be nice someday if the world had the capacity to handle jet-powered tricycles? Maybe, but that's not going to happen immediately enough to help the people already on them when the whole world has been built around children on trikes, whereas the world might be able to change fast enough to accommodate adults on trikes, since that would mostly mean not looking askance at the people riding in different ways. It might be a spectrum, but many things considered opposites are on a spectrum. Light and darkness are on a spectrum too, but what works in the light may not be any use in the darkness, and vice versa.
- drewcoo 3y ago
  You claim autism is characterized by thinking of things in binary. That seems to be a trait of humans, especially humans in distress, not autism. You see an n-dimensional spectrum as having two sides. Assuming you're neurotypical, that helps prove my point.
InSteady 3y ago
>In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans... Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout. Private equity takes a questionable medical service and makes it objectively worse. It would merely be depressing and tiresome except we are now talking about putting neurodivergent children and their caregivers into an increasingly hostile, exploitative, and extractive system so Blackrock and its ilk can put some more black on its balance sheet. Disgusting.
- peteradio 3y ago
  The whole USA economy/retirement plan is tied to this type of practice.
- bettercaust 3y ago
  I'm all for reducing inefficiencies if it reduces costs and/or improves service, but that is not the goal here. The goal is to make as much profit as possible as quickly as possible. Seems like that's what happened with a lot of these ABA clinic consolidations. The fact that successful clinics had to shut down because of this is sickening.
purpleblue 3y ago
I have a friend with 2 autistic children, who is an activist for autism. One is high functioning and the other is very low functioning. He has told me several times that the only thing that works with his low-functioning child is ABA therapy but it's extremely expensive. In Canada, the autism medical intervention is minimal in many parts of the country and a growing crisis. The idea that some activists would try to get rid of it is astonishing.
- bayesianbot 3y ago
  The argument against ABA is exactly that it looks like it works from the perspective of the (neurotypical) parents, but the kids feel like they're basically tortured until they behave like their parents and society expects them to. To be something they aren't, be forced in to a box where you just don't fit, until they do. I haven't gone through official ABA therapy but I had extremely ABA-like childhood and I'd have to agree. When I was kid and didn't know what's different about me I used to think at least there's probably millions like me who don't have to go through that. When I found out about my autism and later ABA, I was horrified to know it's official therapy. But I'm sure there's autistic people who'd disagree with me.
  - purpleblue 3y ago
    My friend's son, who is low-functioning, doesn't talk. He grunts. He is 11 and is a big child and has become increasingly violent. When he was smaller the violence was manageable, but he is over 100 lbs and strong. He sleeps about 3 hours a day, wakes up at 1am every night and screams at the top of his lungs until someone else wakes up. There is no way he can function without ABA therapy which he has been doing since he was 5, because that's when the Canadian government started to cover part of the costs. My friends are close to poverty levels because ABA therapy is over $80,000 per year and he has to pay about half of those costs. The idea that someone such as yourself, would come in and say that this kid is being "forced into a box" is so offensive, it's astonishing that someone could say that. Without ABA therapy he wouldn't be able to be brought outside in the world. My friend's greatest fear is that he and his wife will die and no one will take care of him, and he will either be incarcerated or homeless for the rest of his life. ABA therapy is the ONLY thing that works, and saying that it should be banned is disgusting.
giantg2 3y ago
"They say that its rewards for compliance are dehumanizing;" Have these people never experienced life? You get rewards as a child, in school, and at work for doing the preferred actions. You get punishment in these areas and other areas of life if you do the wrong behaviors. That's just life. Perhaps those people can't see through the facade in "normal" life and this unhidden view of it is somehow harsh to their surface view of the world.
- mplewis 3y ago
  This is an extremely simplistic view on the subject matter. What you said doesn’t take into account anything about how treatments like ABA can have negative impacts on the autistic people who have to undergo them.
  - giantg2 3y ago
    I'm not saying that it hasn't caused harm in some cases, especially with its misapplication. What I am taking issue with is the statement idea that incentives are somehow dehumanizing when they're present in almost every facet of civilized life.
incomingpain 3y ago
ABA is evil and should be illegal. In my jurisdiction, it's illegal but not enforced so they continue to operate. Autism is a very interesting subject for me. I got to 40,000 words in a book and then abruptly stopped when I figured out the cause(not genetic). ADHD, autism, somatics, tics, etc are all the same thing. >A.B.A. is the only autism intervention that is approved by insurers and Medicaid in all fifty states. The sooner this stops the better for the USA. This is really the big problem though, the DSM(american) is written not for patients, but for insurance companies in the USA. We have gotten to a point where the USA would rather harm autistic people then deal with the consequences of the combined spectrum and dealing with the cause.
- Angostura 3y ago
  Did you read the article? It makes a persuasive case that “ABA evil” is an over-simplification. Autism is a spectrum, ABA comes in different forms. Some people find some forms of ABA helpful, but when inappropriately used, it can be oppressive and destructive
- amanaplanacanal 3y ago
  So what is the cause?
logiduck 3y ago
There is a lot of money from Silicon Valley rushing into ABA treatment and having seen the results I can't help but think we do better. Current systems of ABA rely on billing the therapy to insurance and thus most of these ABA "mills" just throw inexperienced college kids who haven't graduated yet at the problem on a session by session basis paid at minimum wage. These college-aged therapists have no interaction with each other since they go directly to the session at the client's house, leave and go home to take notes. Sometimes they switch patients quite regularly so there is never a chance for a comprehensive plan to emerge. The insurance only pays for treating the patient and thus no space is available for training the parents. If we want to do better, we have to start with the parents and develop therapies that last the whole week not just 2 hours a week. Theres a lot of potential for improving the system, but the current ABA system that SV is taking over focuses on extremely short sighted "box checking" and does nothing to develop a long term approach for the family.
gadders 3y ago
This reminds be a bit about the deaf community arguing whether having cochlear implants as a "cure" means they are abandoning their deaf identity.
- smeej 3y ago
  It's especially hard in both cases because the proposed treatments are most effective well before the age of consent, and in many cases, before an age where someone could even express an opinion of any kind. The overwhelming majority of people, especially parents, do not want to hurt (their) children, but there's not any good way to know, today, what the consensus opinion will be by the time the child is an adult, or whether the child would even align with the consensus anyway.
- squigz 3y ago
  I've known about this for a while, and I do find it a bit strange - as an autistic person with severe visual impairment, I wouldn't feel like "curing" either of those things would be abandoning any positive aspect about myself. However, I am curious exactly how prevalent this thinking is in the deaf community? I'd love to see some surveys or some other hard data on how much of the community feels this way about implants.
samatman 3y ago
Lumping autism and Asperger's into a single spectrum disorder was a mistake imho. I'll be using the old terminology here, for clarity. The two share some symptoms, but largely in the "all psychiatric disorders are comorbid" way. Asperger's is best modeled as a personality disorder[0][1] whereas autism proper is a neurodevelopmental disorder, associated with significant developmental disability and delay in mastering basic human skills, some of which, sometimes, never manifest. Most of the flak in "treatment of autism" comes from adults with Aspergers, and usually milder cases of it. This is what happens when you lump such people in with non-verbal twelve-year-olds who wear helmets, especially if misguided physicians and parents attempt to "treat" them using protocols designed for the latter sort of person. People with Asperger's can benefit, sometimes, from guidance and therapy. They, and those close to them, often suffer from their condition, to some degree. But like any personality disorder, there's a spectrum from mild to severe, and on the mild side of the line, at the limit, it's not a personality disorder, it's a personality. None of which has anything to do with autism proper, which is, even in the mildest forms, a severe and lifelong disability. Many who suffer from it will require lifelong personal care, they pose a physical threat to themselves and others, and/or will never be able to master basic life skills (along the lines of wiping your bum or tying shoelaces) which preclude independent living. [0]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8717043/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8717043/ [1]: having a personality disorder isn't a shameful thing, it isn't an insult, and if this characterization upset you, I apologize for that.
- squigz 3y ago
  Well I can wipe my own bum, so I guess I'm doing alright
- giantg2 3y ago
  Asperger's may result in a personality or personality disorder, but is much more than that. The disability to recognize and learn various social cues, consistently grasp context, and prioritize emotion in parallel with logic results in the personality or the personality disorder. There are many other types or subtypes of autism aside from Asperger's and "autism proper". We could separate them out, or lump them together. It's largely unimportant so long as the best diagnosis and intervention can still be made.
RecycledEle 3y ago
I believe everyone deserves the level of respect where someone else will speak with them in a calm and rational way. When therapists, cops, HR, drug addicts, or lawyers do not do refuse to speak rationally, I write then off as not being worth speaking with. Because street drugs/recreational drugs can cause mood imbalances, I have found it productive to ask for drug testing of such people. Can you imagine an ABA therapist that is not a drug addict, but genuinely lacks respect for aspies to the point they refuse to sit down and talk to them? Imagine disliking a group so much that you taunt them with constant overly-emotional drama instead of just speaking with them. Such a therapist would be worse than a drug addict.
bettercaust 3y ago
Seems like a problem of applying a "one-size-fits-all" approach to all patients with autism spectrum disorder (ASD). It's clearly inappropriate to try and change behaviors that are not harmful, but clearly appropriate to change behaviors that are. Banning ABA would throw out the baby with the bathwater.

40 points by jyunwai 3y ago

> Hammond is now the mother of two autistic sons. An autistic autistic-advocate has two sons and they are both autistic? What are the odds of that? Is there some genetic hand down I’ve never heard of?

tacheiordache 3y ago
So you're saying autistic people should not have children?
- xyzelement 3y ago
  I think he's just probing the improbability of this scenario absent a genetic component (which wouldn't be surprising to me if there was - is it asserted that autism is non-genetic?)
- mass_and_energy 3y ago
  I mean, I'm autistic and will adopt instead of having biological children for that very reason. I'm high functioning and still had a cursed childhood owing to it. I wouldn't roll the dice on bestowing that on anybody, let alone my kin. I realize that's a pretty hot take to many people but as someone that dealt with the best-case scenario of the disorder, this isn't something any kid should have to deal with.
  - jprete 3y ago
    I'm willing to take the risk if the opportunity shows itself. But I've spent so much time understanding what the disorder did to me that I think I could teach my child the things that took me so long to learn.
    - mass_and_energy 3y ago
      That's a fair point, and a good way of looking at it. My biggest concern, to be honest, is that they'll be low-functioning and it'll be because of the hand I chose to deal them. The thought alone is haunting
  - the_sleaze9 3y ago
    I find this inspiring - truly an example of heroism and bravery. Bravo.
- jknoepfler 3y ago
  The specific questions asked were "what are the odds of that?" and "is there a genetic component?" The answer to the latter is "yes", which although unquantified in the responses, at least intuitively changes baserate assumptions. I'm not sure how one draws a normative assertion out of the questions, implied or otherwise.
pushcx 3y ago
Yes, it is highly heritable: https://en.wikipedia.org/wiki/Heritability_of_autism https://en.wikipedia.org/wiki/Heritability_of_autism
lawgimenez 3y ago
Can you elaborate on your comment? A lot of autistic advocates have autistic children.
epcoa 3y ago
Heritability of ASD is pretty widely accepted and mainstream for years (family history listed as number 1 risk factor on Wikipedia). https://pubmed.ncbi.nlm.nih.gov/26709141/ https://pubmed.ncbi.nlm.nih.gov/26709141/ Science is long past if it is heritable though and onto why. https://www.pnas.org/doi/10.1073/pnas.2215632120 https://www.pnas.org/doi/10.1073/pnas.2215632120
purpleblue 3y ago
If your first child is autistic then the chances of your second child being autistic skyrocket to well over 50%. The problem is that a lot of autistic symptoms don't show up until you've already had your second kid.

zeroonetwothree 3y ago

https://archive.ph/GONJV https://archive.ph/GONJV

YeGoblynQueenne 3y ago
Or rclick on the annoying pop-up, inspect and delete this div and its contents and the annoying pop up goes away: <div id="onetrust-consent-sdk"> P.S. No, OneTrust, you don't care about our privacy.

_fat_santa 3y ago

I think generally we have turned a corner on Autism where it's moved from being viewed as a disease one treats to just how someone is. I think of it in terms of alignment, we used to try to "align" someone with autism with the way society works but now rather than trying to align the person, we instead align society to the way the person is.

jprete 3y ago
I think it's a terrible approach. I'm on the spectrum myself and my own autistic tendencies clearly hurt me and others around me. I also get intensely frustrated and sometimes hurt by actions that look very much like they came from the autistic traits of others.
- CooCooCaCha 3y ago
  I’m also on the spectrum and I’ve been hard on myself in the past. But I’ve realized that a lot of the stuff I saw as negative was really just me comparing myself to “normal” people and interacting with a world built for normies. There are a lot of people that get me and like having me around. But I’m never going to be understood by neurotypical people.
bittercynic 3y ago
First-hand experience. I suspect I have ASD. With the help of some very kind friends and coworkers, I've learned to to a passable imitation of normal in many circumstances. For example, the clerk at the supermarket probably doesn't know, unless they try to share friendly banter with me. Having emotional reactions that are way outside "normal", and generally having a below average ability to understand the thoughts and feelings of others causes major inconveniences. Being socially odd leads to accidentally hurting people's feelings, and being perceived as erratic and unpredictable. Sometimes I can pick up on social cues relatively normally, and other times I'm way out in left field, so I must be choosing to behave this way, right? I wouldn't necessarily want to just be normal and average in every way, but it would sure be convenient to have normal, average, social capabilities.

louwrentius 3y ago

Roughly speaking, there are two categories of autistic children. The therapy is focussed on autistic people who need care 24/7. The therapy doesn't seem to fit autistic children who are verbal but have issues with social skills. The latter group had some bad experiences with this kind of one-size-fits-all therapy. But the argument is made that the therapy isn't totally inhumane/worthless as it does help 'severe' autism cases.

resoluteteeth 3y ago
> Roughly speaking, there are two categories of autistic children. The therapy is focussed on autistic people who need care 24/7. The therapy doesn't seem to fit autistic children who are verbal but have issues with social skills. > The latter group had some bad experiences with this kind of one-size-fits-all therapy. But the argument is made that the therapy isn't totally inhumane/worthless as it does help 'severe' autism cases. That makes sense, but the article seems to imply that a lot of this therapy is focused on correcting "traits that may be socially stigmatizing but are harmless unto themselves, such as fidgeting, avoiding eye contact, or stereotypic behaviors commonly known as stimming—rocking, hand-flapping, and so forth." I can't imagine that spending a lot of time correcting minor, harmless, socially unacceptable behaviors would be that beneficial for nonverbal people who need 24/7 care, and if it is seen as inhumane or worthless for "autistic children who are verbal but have issues with social skills" perhaps it needs to be revamped to focus on the parts of it that are useful for more severe cases?
hooverd 3y ago
And from the article, it doesn't help that the pioneers of ABA had roughly the same compassion for their subjects as Josef Mengele. Ze beatings will continue until the social skills improve (and we get rid of the homosexuality)!
- bitwize 3y ago
  Funny you should mention Mengele: it's come out that Hans Asperger was a Nazi sympathizer, and had some of the worst cases of children with autism-like symptoms sent to Spiegelgrund to be killed because he couldn't train them to conform to the Nazi collectivist ideal. We on the spectrum have had to deal with the cruelty of certain doctors and therapists when it turns out we don't fit into their Procrustean beds since we were first identified. Asperger's counterpart Leo Kanner, also an Austrian, helped Jewish doctors escape the Nazis to the USA. So he's... kind of a hero.

smeej 3y ago

I can't help but wonder if there's something about the tendency to black-and-white thinking characteristic of autism that makes it hard for people on one end of the autism spectrum to appreciate that the experiences of people on the opposite end might be very different from their own. My sister was a special education teacher and had a theory about autism that she described with a metaphor. Imagine riding a tricycle. Neurotypical people are along the fairly limited spectrum of "healthy children riding tricycles." Some are a little better or a little worse, but most can do it, and the skill variation isn't that high. People on one end of the autism spectrum are more like adults trying to ride a tricycle. They're too big, too powerful. It doesn't work now, but if they try really hard or come up with creative workarounds, they can sort of do it. People on the other end of the autism spectrum are trying to ride a tricycle with a jet engine attached. There's way too much power. The tricycle can't handle it. There's no way to ride the tricycle with a jet engine on it that will even vaguely resemble a child riding a tricycle. Maybe if you're an adult riding a tricycle, you can argue you don't need help. You'll come up with something. You might have to ride with your knees over the handlebars, but you'll still get where you're going. It would just help if people would leave you alone and stop staring at you while you do it. But if you're trying to navigate a jet bicycle, that's not really going to help. You might need really severe intervention to keep you from crashing and hurting yourself. Maybe that's picking the trike up off the ground or something so at least it's not crashing, even if the heat is still a lot to handle (it's a metaphor; it's not perfect). Might it be nice someday if the world had the capacity to handle jet-powered tricycles? Maybe, but that's not going to happen immediately enough to help the people already on them when the whole world has been built around children on trikes, whereas the world might be able to change fast enough to accommodate adults on trikes, since that would mostly mean not looking askance at the people riding in different ways. It might be a spectrum, but many things considered opposites are on a spectrum. Light and darkness are on a spectrum too, but what works in the light may not be any use in the darkness, and vice versa.

drewcoo 3y ago
You claim autism is characterized by thinking of things in binary. That seems to be a trait of humans, especially humans in distress, not autism. You see an n-dimensional spectrum as having two sides. Assuming you're neurotypical, that helps prove my point.

InSteady 3y ago

>In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans... Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout. Private equity takes a questionable medical service and makes it objectively worse. It would merely be depressing and tiresome except we are now talking about putting neurodivergent children and their caregivers into an increasingly hostile, exploitative, and extractive system so Blackrock and its ilk can put some more black on its balance sheet. Disgusting.

peteradio 3y ago
The whole USA economy/retirement plan is tied to this type of practice.
bettercaust 3y ago
I'm all for reducing inefficiencies if it reduces costs and/or improves service, but that is not the goal here. The goal is to make as much profit as possible as quickly as possible. Seems like that's what happened with a lot of these ABA clinic consolidations. The fact that successful clinics had to shut down because of this is sickening.

purpleblue 3y ago

I have a friend with 2 autistic children, who is an activist for autism. One is high functioning and the other is very low functioning. He has told me several times that the only thing that works with his low-functioning child is ABA therapy but it's extremely expensive. In Canada, the autism medical intervention is minimal in many parts of the country and a growing crisis. The idea that some activists would try to get rid of it is astonishing.

bayesianbot 3y ago
The argument against ABA is exactly that it looks like it works from the perspective of the (neurotypical) parents, but the kids feel like they're basically tortured until they behave like their parents and society expects them to. To be something they aren't, be forced in to a box where you just don't fit, until they do. I haven't gone through official ABA therapy but I had extremely ABA-like childhood and I'd have to agree. When I was kid and didn't know what's different about me I used to think at least there's probably millions like me who don't have to go through that. When I found out about my autism and later ABA, I was horrified to know it's official therapy. But I'm sure there's autistic people who'd disagree with me.
- purpleblue 3y ago
  My friend's son, who is low-functioning, doesn't talk. He grunts. He is 11 and is a big child and has become increasingly violent. When he was smaller the violence was manageable, but he is over 100 lbs and strong. He sleeps about 3 hours a day, wakes up at 1am every night and screams at the top of his lungs until someone else wakes up. There is no way he can function without ABA therapy which he has been doing since he was 5, because that's when the Canadian government started to cover part of the costs. My friends are close to poverty levels because ABA therapy is over $80,000 per year and he has to pay about half of those costs. The idea that someone such as yourself, would come in and say that this kid is being "forced into a box" is so offensive, it's astonishing that someone could say that. Without ABA therapy he wouldn't be able to be brought outside in the world. My friend's greatest fear is that he and his wife will die and no one will take care of him, and he will either be incarcerated or homeless for the rest of his life. ABA therapy is the ONLY thing that works, and saying that it should be banned is disgusting.

giantg2 3y ago

"They say that its rewards for compliance are dehumanizing;" Have these people never experienced life? You get rewards as a child, in school, and at work for doing the preferred actions. You get punishment in these areas and other areas of life if you do the wrong behaviors. That's just life. Perhaps those people can't see through the facade in "normal" life and this unhidden view of it is somehow harsh to their surface view of the world.

mplewis 3y ago
This is an extremely simplistic view on the subject matter. What you said doesn’t take into account anything about how treatments like ABA can have negative impacts on the autistic people who have to undergo them.
- giantg2 3y ago
  I'm not saying that it hasn't caused harm in some cases, especially with its misapplication. What I am taking issue with is the statement idea that incentives are somehow dehumanizing when they're present in almost every facet of civilized life.

incomingpain 3y ago

ABA is evil and should be illegal. In my jurisdiction, it's illegal but not enforced so they continue to operate. Autism is a very interesting subject for me. I got to 40,000 words in a book and then abruptly stopped when I figured out the cause(not genetic). ADHD, autism, somatics, tics, etc are all the same thing. >A.B.A. is the only autism intervention that is approved by insurers and Medicaid in all fifty states. The sooner this stops the better for the USA. This is really the big problem though, the DSM(american) is written not for patients, but for insurance companies in the USA. We have gotten to a point where the USA would rather harm autistic people then deal with the consequences of the combined spectrum and dealing with the cause.

Angostura 3y ago
Did you read the article? It makes a persuasive case that “ABA evil” is an over-simplification. Autism is a spectrum, ABA comes in different forms. Some people find some forms of ABA helpful, but when inappropriately used, it can be oppressive and destructive
amanaplanacanal 3y ago
So what is the cause?

logiduck 3y ago

There is a lot of money from Silicon Valley rushing into ABA treatment and having seen the results I can't help but think we do better. Current systems of ABA rely on billing the therapy to insurance and thus most of these ABA "mills" just throw inexperienced college kids who haven't graduated yet at the problem on a session by session basis paid at minimum wage. These college-aged therapists have no interaction with each other since they go directly to the session at the client's house, leave and go home to take notes. Sometimes they switch patients quite regularly so there is never a chance for a comprehensive plan to emerge. The insurance only pays for treating the patient and thus no space is available for training the parents. If we want to do better, we have to start with the parents and develop therapies that last the whole week not just 2 hours a week. Theres a lot of potential for improving the system, but the current ABA system that SV is taking over focuses on extremely short sighted "box checking" and does nothing to develop a long term approach for the family.

gadders 3y ago

This reminds be a bit about the deaf community arguing whether having cochlear implants as a "cure" means they are abandoning their deaf identity.

smeej 3y ago
It's especially hard in both cases because the proposed treatments are most effective well before the age of consent, and in many cases, before an age where someone could even express an opinion of any kind. The overwhelming majority of people, especially parents, do not want to hurt (their) children, but there's not any good way to know, today, what the consensus opinion will be by the time the child is an adult, or whether the child would even align with the consensus anyway.
squigz 3y ago
I've known about this for a while, and I do find it a bit strange - as an autistic person with severe visual impairment, I wouldn't feel like "curing" either of those things would be abandoning any positive aspect about myself. However, I am curious exactly how prevalent this thinking is in the deaf community? I'd love to see some surveys or some other hard data on how much of the community feels this way about implants.

samatman 3y ago

Lumping autism and Asperger's into a single spectrum disorder was a mistake imho. I'll be using the old terminology here, for clarity. The two share some symptoms, but largely in the "all psychiatric disorders are comorbid" way. Asperger's is best modeled as a personality disorder[0][1] whereas autism proper is a neurodevelopmental disorder, associated with significant developmental disability and delay in mastering basic human skills, some of which, sometimes, never manifest. Most of the flak in "treatment of autism" comes from adults with Aspergers, and usually milder cases of it. This is what happens when you lump such people in with non-verbal twelve-year-olds who wear helmets, especially if misguided physicians and parents attempt to "treat" them using protocols designed for the latter sort of person. People with Asperger's can benefit, sometimes, from guidance and therapy. They, and those close to them, often suffer from their condition, to some degree. But like any personality disorder, there's a spectrum from mild to severe, and on the mild side of the line, at the limit, it's not a personality disorder, it's a personality. None of which has anything to do with autism proper, which is, even in the mildest forms, a severe and lifelong disability. Many who suffer from it will require lifelong personal care, they pose a physical threat to themselves and others, and/or will never be able to master basic life skills (along the lines of wiping your bum or tying shoelaces) which preclude independent living. [0]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8717043/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8717043/ [1]: having a personality disorder isn't a shameful thing, it isn't an insult, and if this characterization upset you, I apologize for that.

squigz 3y ago
Well I can wipe my own bum, so I guess I'm doing alright
giantg2 3y ago
Asperger's may result in a personality or personality disorder, but is much more than that. The disability to recognize and learn various social cues, consistently grasp context, and prioritize emotion in parallel with logic results in the personality or the personality disorder. There are many other types or subtypes of autism aside from Asperger's and "autism proper". We could separate them out, or lump them together. It's largely unimportant so long as the best diagnosis and intervention can still be made.

RecycledEle 3y ago

I believe everyone deserves the level of respect where someone else will speak with them in a calm and rational way. When therapists, cops, HR, drug addicts, or lawyers do not do refuse to speak rationally, I write then off as not being worth speaking with. Because street drugs/recreational drugs can cause mood imbalances, I have found it productive to ask for drug testing of such people. Can you imagine an ABA therapist that is not a drug addict, but genuinely lacks respect for aspies to the point they refuse to sit down and talk to them? Imagine disliking a group so much that you taunt them with constant overly-emotional drama instead of just speaking with them. Such a therapist would be worse than a drug addict.

bettercaust 3y ago

Seems like a problem of applying a "one-size-fits-all" approach to all patients with autism spectrum disorder (ASD). It's clearly inappropriate to try and change behaviors that are not harmful, but clearly appropriate to change behaviors that are. Banning ABA would throw out the baby with the bathwater.