The argument over a long-standing autism intervention(newyorker.com)
newyorker.com
The argument over a long-standing autism intervention
https://www.newyorker.com/science/annals-of-medicine/the-argument-over-a-long-standing-autism-intervention
63 comments
I think it’s more explanatory that the autism spectrum is itself a very wide spectrum.
I’ll make a comparison.
When we talk about conditions like ADHD or bipolar, there’s a whole spectrum which makes the discussion hard to work with. There are a few different flavors of ADHD and people with these different flavors have very different experiences. Like, did you not do your homework assignment because you put it in your backpack and forgot about it? Or did you not do your homework assignment because you took it out, knew you needed to do it, but just stared at it. Both are symptomatic of “ADHD” but I question whether these to things should be given the same label. Then—once we’ve talked about the spectrum of ADHD and bipolar—there’s a spectrum of people who have, like, 60% ADHD and 40% bipolar, a diagnosis of neither condition or both, and different experiences.
My impression of autism is that the “size of the spectrum” is much larger than the size of the spectrum for, say, ADHD or bipolar.
I’ll make a comparison.
When we talk about conditions like ADHD or bipolar, there’s a whole spectrum which makes the discussion hard to work with. There are a few different flavors of ADHD and people with these different flavors have very different experiences. Like, did you not do your homework assignment because you put it in your backpack and forgot about it? Or did you not do your homework assignment because you took it out, knew you needed to do it, but just stared at it. Both are symptomatic of “ADHD” but I question whether these to things should be given the same label. Then—once we’ve talked about the spectrum of ADHD and bipolar—there’s a spectrum of people who have, like, 60% ADHD and 40% bipolar, a diagnosis of neither condition or both, and different experiences.
My impression of autism is that the “size of the spectrum” is much larger than the size of the spectrum for, say, ADHD or bipolar.
I have sort of deliberately not done a deep dive on ADHD and autism, mostly because I don't want to appropriate conditions that I maybe don't have. But deep down I feel that I had stereotypical Bart Simpson ADD in the 80s, before it was widely known or medicated. I simultaneously got my name on the chalkboard with 3-4 checkmarks every single day, while acing exams and daydreaming out of the window because I was so profoundly bored. I was hyper then, but today am more on the inattentive side.
Anyway, I'm curious if others have had luck rewiring their brains. I discovered drinking and partying in the late 90s at college and became a different person. Then spent nearly the entirety of the 2000s in such a deep dark depression that my psyche had to reboot my physical brain and body to save itself. My belief systems have changed so many times that this feels like roughly my 7th life within this incarnation. It's like being an alien on Earth, or constantly reliving the shin conditioning scene on The Accountant (I can't find a YouTube version):
https://coub.com/view/1to75k
My experience of daily life now is performative. From the time I wake up until I go to bed, I'm in motion when I want to stop and rest. I'm talking when I want to remain silent. I'm silent when I want to talk. I'm interrupted constantly when all I want peace. I'm so terribly alone in the company of others. I'm thinking about transcendence when discussing the weather. It's an unending onslaught to the senses, a yearning for beauty in an ugly world, an exhaustion and boredom when I should be having fun. A separation between what my life is and what it could be that is so vast that the only things that saved me were silencing all internal monologue and just being in the now in gratitude of conscious awareness. Because my main association with the 3D material world is pain and suffering.
And yet, maybe I've just arrived. Novelty in the world seems to be on the rise again. We're going through a flipping where victims are being lifted above their attackers. The meek seem to be inheriting the Earth. The powerful are looking increasingly weak in a spiritual sense, out of touch, like they haven't aged well in this new era.
Where I'm going with this is, can our position on the spectrum be changed? Or are we where we're at for life, unable to integrate with the mainstream if our "condition" is too fringe? Is that adaptability what distinguishes ADHD from autism? Or do I have it backwards, that autistic people are capable in ways the rest of us can't even imagine, and maybe we're the ones who can't adapt?
Anyway, I'm curious if others have had luck rewiring their brains. I discovered drinking and partying in the late 90s at college and became a different person. Then spent nearly the entirety of the 2000s in such a deep dark depression that my psyche had to reboot my physical brain and body to save itself. My belief systems have changed so many times that this feels like roughly my 7th life within this incarnation. It's like being an alien on Earth, or constantly reliving the shin conditioning scene on The Accountant (I can't find a YouTube version):
https://coub.com/view/1to75k
My experience of daily life now is performative. From the time I wake up until I go to bed, I'm in motion when I want to stop and rest. I'm talking when I want to remain silent. I'm silent when I want to talk. I'm interrupted constantly when all I want peace. I'm so terribly alone in the company of others. I'm thinking about transcendence when discussing the weather. It's an unending onslaught to the senses, a yearning for beauty in an ugly world, an exhaustion and boredom when I should be having fun. A separation between what my life is and what it could be that is so vast that the only things that saved me were silencing all internal monologue and just being in the now in gratitude of conscious awareness. Because my main association with the 3D material world is pain and suffering.
And yet, maybe I've just arrived. Novelty in the world seems to be on the rise again. We're going through a flipping where victims are being lifted above their attackers. The meek seem to be inheriting the Earth. The powerful are looking increasingly weak in a spiritual sense, out of touch, like they haven't aged well in this new era.
Where I'm going with this is, can our position on the spectrum be changed? Or are we where we're at for life, unable to integrate with the mainstream if our "condition" is too fringe? Is that adaptability what distinguishes ADHD from autism? Or do I have it backwards, that autistic people are capable in ways the rest of us can't even imagine, and maybe we're the ones who can't adapt?
> Or do I have it backwards, that autistic people are capable in ways the rest of us can't even imagine, and maybe we're the ones who can't adapt?
https://en.wikipedia.org/wiki/Social_model_of_disability
You can take two people who exhibit the same symptoms, medically, and place them in different environments, and one will thrive, but the other person will suffer. You can’t draw a line and say that these people are fine but the environment is wrong, or the environment is wrong and the people are (medically) fine, but instead the line between “medical problem” and “social problem” is somewhat arbitrary and movable.
The same is true for physical impairments.
https://en.wikipedia.org/wiki/Social_model_of_disability
You can take two people who exhibit the same symptoms, medically, and place them in different environments, and one will thrive, but the other person will suffer. You can’t draw a line and say that these people are fine but the environment is wrong, or the environment is wrong and the people are (medically) fine, but instead the line between “medical problem” and “social problem” is somewhat arbitrary and movable.
The same is true for physical impairments.
Are...are you worried that you are going to catch ADHD or autism because you read about it?
"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."
I don't think it's specific to autism. This type of bias is extremely common in everyday life, especially if you see yourself as the victim of some failed activity (this, other therapy, failed medical procedures, or any compulsory thing in schools that someone was bad at or got hurt doing). There tends to be an overreaction when anyone figures out that some preferred/standard action is not what they were led to believe when thier eyes are finally opened, usually through an injury.
I don't think it's specific to autism. This type of bias is extremely common in everyday life, especially if you see yourself as the victim of some failed activity (this, other therapy, failed medical procedures, or any compulsory thing in schools that someone was bad at or got hurt doing). There tends to be an overreaction when anyone figures out that some preferred/standard action is not what they were led to believe when thier eyes are finally opened, usually through an injury.
> 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.
You've quite succinctly described the Double Empathy Problem[1].
Personally I find it more strange that allistic[2] people can't understand autistic people. The supposed ability of allistic people to pick up on people's body language, social cues, and subtext, somehow doesn't extend to autistic individuals. Utterly baffling.
1. https://en.wikipedia.org/wiki/Double_empathy_problem
2. Allistic - not affected by autism
You've quite succinctly described the Double Empathy Problem[1].
Personally I find it more strange that allistic[2] people can't understand autistic people. The supposed ability of allistic people to pick up on people's body language, social cues, and subtext, somehow doesn't extend to autistic individuals. Utterly baffling.
1. https://en.wikipedia.org/wiki/Double_empathy_problem
2. Allistic - not affected by autism
I don't know if this helps at all, but I think allistic people are able to pick up on each other's body language, social cues, and subtext because they instinctively use the same ones.
If an allistic person is tapping their foot while I'm talking to them, for example, I will be accurate more often than not if I assume they're growing bored with the conversation, because that's what would cause me to take the same action.
If an autistic person is tapping their foot while I'm talking to them, there is every chance it has nothing to do with me, or that it might mean they're extremely interested in what I'm saying, and this is how they are coping with the excess energy of that excited interest. If I assume they're growing bored, I'll probably be wrong.
I'm no more surprised by this than I am when monolingual people have no trouble understanding someone speaking their own language, but are completely incapable of understanding someone speaking a different language.
If an allistic person is tapping their foot while I'm talking to them, for example, I will be accurate more often than not if I assume they're growing bored with the conversation, because that's what would cause me to take the same action.
If an autistic person is tapping their foot while I'm talking to them, there is every chance it has nothing to do with me, or that it might mean they're extremely interested in what I'm saying, and this is how they are coping with the excess energy of that excited interest. If I assume they're growing bored, I'll probably be wrong.
I'm no more surprised by this than I am when monolingual people have no trouble understanding someone speaking their own language, but are completely incapable of understanding someone speaking a different language.
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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.
You see an n-dimensional spectrum as having two sides. Assuming you're neurotypical, that helps prove my point.
It should be obvious that what is meant is that binary thinking is more common in autistic than neurotypical people. This is patently obvious if you spend time around many autistic people, though certainly isn’t true of all cases.
I chose the word "characteristic" pretty intentionally. I did not mean that difficulty appreciating nuance is exclusive to autism, nor that it is the only characteristic of autism.
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/
[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.
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/
[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.
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.
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.
If it helps, think of the old "Aspergers" as "Autism" and the old "Autism" as "Autism with a developmental comorbidity".
I think the idea being that "autism" is the "Has problems with social skills" part of it, and the developmental issues being something that frequently come along with it.
But as nobody knows exactly what autism is, and it's defined as an intersecting cluster of symptoms, I suspect that this conversation won't be a useful one until we get to the bottom of it.
I think the idea being that "autism" is the "Has problems with social skills" part of it, and the developmental issues being something that frequently come along with it.
But as nobody knows exactly what autism is, and it's defined as an intersecting cluster of symptoms, I suspect that this conversation won't be a useful one until we get to the bottom of it.
Well I can wipe my own bum, so I guess I'm doing alright
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.
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.
> 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?
> 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?
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)!
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.
Asperger's counterpart Leo Kanner, also an Austrian, helped Jewish doctors escape the Nazis to the USA. So he's... kind of a hero.
This reminds be a bit about the deaf community arguing whether having cochlear implants as a "cure" means they are abandoning their deaf identity.
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.
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.
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.
"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.
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.
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.
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.
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.
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.
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.
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.
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.
I have had exposure to ABA but mostly through the lens of the parents with children using ABA and it was mostly positive. Being able to take their kids out and put them in the car for the first time without a breakdown after starting therapy was a major achievement in their eyes.
I am just curious though about what you limits are? Isn't everyone being put into a box? Isn't that just being part of society? I don't know what your experiences are, but probably isn't there a spectrum of ABA from good to bad just like there is a spectrum of all types of interventions and parenting from being overbearing to too lenient?
Just genuinely interested in that it seems like being part of society unless you are part of the 1% has a big aspect of conformity and "fitting in" to society even if that isn't what you want to do. That historically to me has just been known as growing up.
I am just curious though about what you limits are? Isn't everyone being put into a box? Isn't that just being part of society? I don't know what your experiences are, but probably isn't there a spectrum of ABA from good to bad just like there is a spectrum of all types of interventions and parenting from being overbearing to too lenient?
Just genuinely interested in that it seems like being part of society unless you are part of the 1% has a big aspect of conformity and "fitting in" to society even if that isn't what you want to do. That historically to me has just been known as growing up.
I think a lot of traits or experiences of autistic people are found in many neurotypicals as well, but the levels/intensity actually make it completely different. I definitely see your society box, but it can be quite different experience when the things you're hiding are main part of your being, brain and thoughts, for all your childhood.
I only have my experience - it made me extremely stressed for over a decade. It felt like anything I wanted to be or do was probably wrong in some way that I could never predict, as often things I thought would be perfectly fine turned out to be wrong, often for reasons that I really couldn't understand why or base general rules on. I was basically scared around the clock that somebody catches me behaving in wrong way, and I was always prepared to stop everything and start masking - looking like and doing things my peers expect me to. I went from talkative happy kid to extremely quiet person who probably always looked like I'm ready to soil my pants. I spoke really little for a ~decade, feeling like every time I'd open my mouth I'll say something wrong and it can be used against me. Later on I stayed the nights awake quiet in a dark room and slept when other people were home and awake, because then I could maximize the time being just myself without worrying about who I was expected to be. I pretty much still don't have a good relationship with my parents, they've never known who I am as I just learnt to hide myself. I think they're good parents, they just didn't know what to do with different kind of kid and made some terrible choices in a conservative time and place where having a "non-normal" kid was not acceptable outcome. And I wasn't really good at communicating what I was feeling or the kind of damage it was doing to me.
I know I took it in a really hard way, I knew even then. As autistic person I can have quite intense feelings. Like I said I'm sure there's autistic people who have the opposite opinion and experience. But I know I'm wasn't some special case, I'm quite sure there's a lot of trauma associated with a lot of ABA'd children. I can definitely understand the parent's viewpoint and also that there's wide spectrum of completely different cases, but I really don't think this should be ABA-parents vs autistic kids disagreement, we both would have a better life if we'd have some better therapies for autistic people - I just think the best starting point would be understanding what causes the stress/anxiety/discomfort/meltdowns and trying to fix the underlying issues, not from trying to hide the symptoms like we're praying gay away. The goal should be a child with as good, healthy life as possible, not some expected behavior. Maybe ABA style therapy is good for some and I expressed myself in kinda extreme way - there's some history behind that, that I really haven't fully processed in a healthy way yet - but parents should understand when it's used in the wrong way or wrong cases it can go really bad, it's not something that should be just done because good options are lacking.
I only have my experience - it made me extremely stressed for over a decade. It felt like anything I wanted to be or do was probably wrong in some way that I could never predict, as often things I thought would be perfectly fine turned out to be wrong, often for reasons that I really couldn't understand why or base general rules on. I was basically scared around the clock that somebody catches me behaving in wrong way, and I was always prepared to stop everything and start masking - looking like and doing things my peers expect me to. I went from talkative happy kid to extremely quiet person who probably always looked like I'm ready to soil my pants. I spoke really little for a ~decade, feeling like every time I'd open my mouth I'll say something wrong and it can be used against me. Later on I stayed the nights awake quiet in a dark room and slept when other people were home and awake, because then I could maximize the time being just myself without worrying about who I was expected to be. I pretty much still don't have a good relationship with my parents, they've never known who I am as I just learnt to hide myself. I think they're good parents, they just didn't know what to do with different kind of kid and made some terrible choices in a conservative time and place where having a "non-normal" kid was not acceptable outcome. And I wasn't really good at communicating what I was feeling or the kind of damage it was doing to me.
I know I took it in a really hard way, I knew even then. As autistic person I can have quite intense feelings. Like I said I'm sure there's autistic people who have the opposite opinion and experience. But I know I'm wasn't some special case, I'm quite sure there's a lot of trauma associated with a lot of ABA'd children. I can definitely understand the parent's viewpoint and also that there's wide spectrum of completely different cases, but I really don't think this should be ABA-parents vs autistic kids disagreement, we both would have a better life if we'd have some better therapies for autistic people - I just think the best starting point would be understanding what causes the stress/anxiety/discomfort/meltdowns and trying to fix the underlying issues, not from trying to hide the symptoms like we're praying gay away. The goal should be a child with as good, healthy life as possible, not some expected behavior. Maybe ABA style therapy is good for some and I expressed myself in kinda extreme way - there's some history behind that, that I really haven't fully processed in a healthy way yet - but parents should understand when it's used in the wrong way or wrong cases it can go really bad, it's not something that should be just done because good options are lacking.
"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."
That's because it was misapplied - it's not about fitting in. When parents use this to make their kid "normal" of course it will be like torture. This is supposed to be for getting people to a survivable level, eg non-verbal improving to "tooth hurts". If you're already to the level of getting by mostly independently, this is not the correct intervention.
It's like prescribing an opioid for a minor ache. Opioids get misused and demonized, but they do have valid applications.
That's because it was misapplied - it's not about fitting in. When parents use this to make their kid "normal" of course it will be like torture. This is supposed to be for getting people to a survivable level, eg non-verbal improving to "tooth hurts". If you're already to the level of getting by mostly independently, this is not the correct intervention.
It's like prescribing an opioid for a minor ache. Opioids get misused and demonized, but they do have valid applications.
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.
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.
I think this article does a good job of trying to bring in the voices of some of those parents.
Like, it's one thing for an autistic teenager who is otherwise getting by in a main stream high school to say, "I don't want your stupid noisy dances with the flashing lights and the smelly people all bumping into each other. Why can't you leave me alone about it, or just let me organize board game night as an alternative in a different part of the school?"
It's quite another for someone to have such profound difficulty communicating that they smash their head against walls and cause themselves brain damage trying to get some point across.
It seems like it should be entirely valid to have different treatments for these different cases, and it does seem very unfair for people having the first kind to universalize their own experience to include people having the second kind.
Like, it's one thing for an autistic teenager who is otherwise getting by in a main stream high school to say, "I don't want your stupid noisy dances with the flashing lights and the smelly people all bumping into each other. Why can't you leave me alone about it, or just let me organize board game night as an alternative in a different part of the school?"
It's quite another for someone to have such profound difficulty communicating that they smash their head against walls and cause themselves brain damage trying to get some point across.
It seems like it should be entirely valid to have different treatments for these different cases, and it does seem very unfair for people having the first kind to universalize their own experience to include people having the second kind.
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Isn't there a kinder way to say all this?
>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.
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.
The whole USA economy/retirement plan is tied to this type of practice.
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.
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.
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.
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.
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.
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.
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
So what is the cause?
> 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?
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?
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/
Science is long past if it is heritable though and onto why.
https://www.pnas.org/doi/10.1073/pnas.2215632120
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
Yes, it is highly heritable: https://en.wikipedia.org/wiki/Heritability_of_autism
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.
Can you elaborate on your comment? A lot of autistic advocates have autistic children.
So you're saying autistic people should not have children?
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.
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.
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?)
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.
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.
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
I find this inspiring - truly an example of heroism and bravery. Bravo.
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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.
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.
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.
I would give anything to just be normal. My inability to navigate social situations has had an enormous negative impact on my life going back all the way to grade school.
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.
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.
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.
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.