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I have two severely autistic children who cannot talk and who need lifelong care. That's the REAL autism, the one Leo Kanner identified in 1943. Not the rebrand

I have two severely autistic children who cannot talk and who need lifelong care. That's the REAL autism, the one Leo Kanner identified in 1943. Not the rebranded Aspergers with extra rainbows. I wouldn't wish real autism on my worst enemy.

cogman10 2y ago
Yeah, I also have a severely autistic child. Unfortunately, I feel like the autism community's search for acceptance often puts on blinders to such individuals. That is particularly frustrating because those vocal about autism acceptance often do it while castigating therapy as if it's always a horrible thing aimed at hiding their true selves. We are working as hard as possible so that our child can hopefully advocate for themselves when we are worm food. If that means "breaking" their true selves to teach them to communicate (speech therapy), or using behavioral therapy to get them to brush their teeth (even though they hate everything about it), so be it. I get why the DSM widened the definition, but what it means to have severe autism is very different from what it means to have mild autism. If my child has deep thoughts, they have very little ability to express them.
- nicoburns 2y ago
  > If my child has deep thoughts, they have very little ability to express them I'm sympathetic to much of your comment, but the "if" in this sentence really made me wince. Seems to me there's a lot of evidence that almost everyone with autism (including those with very "severe" autism) do indeed have deep intelligent thoughts and just can't communicate them (i.e. that autism is primarily a sensory disorder rather than a cognitive one). The best example I have of this is someone who was entirely non-verbal their entire life, but managed to write an entire book when taught to communicate via pointing at letters on a printed "keyboard" (perhaps someone else can find the reference- it was on HN a few years ago) Which also points to something which I think is really key to helping those with autism: that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively. That might mean writing instead of speaking. Or using mouthwash instead of brushing their teeth. You might well have tried all of these kind of things, but if you haven't then please consider it!
  - cogman10 2y ago
    > Seems to me there's a lot of evidence that almost everyone with autism This is a true statement because almost everyone with autism does not have severe autism. Like, I'm sorry, but the research I've read about autism does not paint such a rosy picture about the intellectual capabilities of kids with severe autism. That doesn't mean I'm going to treat my kid poorly because there are cases of kids with severe autism and no intellectual disabilities. That, however, is the exception and not the rule. Severe autism is very frequently accompanied with intellectual disability. [1] I've read the same books authored by kids with no verbal communication. I've heard the stories of lawyers with severe autism. However, those are the exceptions. I certainly hope my kid is one of those exceptions, they are on border of severity which gives me a lot of hope. However, I do have to accept the fact that the most likely outcome for the rest of their life is needing support. It's a fact I've come to terms with over their life as improvements in communication have slowed. > that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively. Sorry, but this severely misunderstands what we work on. It's not about doing the "normal" thing. My child, for example, has extreme food aversion problems. They have a very limited diet which ultimately is not healthy. We do food therapy because expanding their diet and tolerance to eating foods in non-preferred ways is super important. They attend school and unfortunately if the wrong aide is in charge of setting up their meal, they will frequently simply go hungry. I'm not working on "normalizing" my kid. I'm working on getting my kid to be able to advocate their needs and to be self-reliant as much as they are capable. > That might mean writing instead of speaking. Already working on that. They have an AAC device and have been to therapy to learn how to use it for the last year. > Or using mouthwash instead of brushing their teeth. Or sedating them when they inevitably need to have cavities drilled? You can't replace brushing your teeth with mouthwash. Feel free to ask your dentist if that's acceptable on your next visit. [1] https://www.verywellhealth.com/what-is-severe-autism-260044 https://www.verywellhealth.com/what-is-severe-autism-260044
  - fragmede 2y ago
    that book is "Autismland: Climbing Out of Autism’s Silent Prison” by Ido Kedar.
CobaltFire 2y ago
As a father of a child in the same situation as yours, who has been personally diagnosed with Aspergers: 100% agree. It’s not something you want. I’m completely over being polite to the people who spout this “I have the symptoms but no diagnosis” line then try to speak about it.
- runarberg 2y ago
  Curious question: Do psychiatrists still offer the Aspergers diagnostic? I was under the impression they removed it in the DSM-V revision in favor of Autism Spectrum Disorder. A large part of the neuro-devergency community is not fan of the Asperger’s term. The primary reason is that the distinction between Aspergers and Autism was based on outdated—and frankly, problematic—believes around IQ.
  - PlutoIsAPlanet 2y ago
    From personal experience, although it was about a decade ago, my doctor referred to it as Aspergers but put it down as high functioning autism. This was in the UK though.
    - runarberg 2y ago
      I’m guessing old habits die hard, especially among the expert classes. I think the ICD-11 standard (which is used in Europe instead of DSM-V) didn’t make the merge until a couple of years ago. Although as far as I’m aware psychiatrists generally use the DSM internally in their work, and mostly refer to ICD for e.g. insurance reasons. Also—since I talking about this—I think many in the neuro-divergence community don’t like High Functioning Autism either (and it is not included in any of the diagnostic tools anyway). The reason cited is that it is rather ableist to call it “high functioning” and would much rather focus on the specif disabilities which needs accommodating.
  - CobaltFire 2y ago
    My diagnosis is ~20 years old and would likely be HFA now.
eslaught 2y ago
I'm reading NeuroTribes by Steve Silberman, and while I'm not all the way through, the narrative of there being a "real" autism (and specifically as identified by Kranner) is very problematic at several levels. First, Kranner hired multiple staff who had worked under Asperger and therefore there are questions about priority. But putting that aside, Asperger was actually aware of the more serious autism cases and intentionally hid them to protect his patients from Nazi concentration camps (or just straight up murder in their "psychiatric" facilities), which in the early days targeted many children who would today be diagnosed with autism (with horrible consequences, obviously). Kranner also intentionally set up his referral network to filter out the lower end of the spectrum of cases, such that he missed what Asperger has correctly identified before him: that is, that it's a spectrum. Being a spectrum means that there is an extreme end where things are really, really difficult. I'm sorry to hear you're experiencing that, but that's not to say the spectrum isn't real or there hasn't been a battle to get to the point of recognizing that it exists. As to the GP's comments specifically, NeuroTribes provides a lot of evidence that searches for autism "cures" have almost universally hurt autistic people, and I mean this is a very practical, and frankly horrifying, sense, not in the "my feelings are being hurt" sense. The piercing irony of a lot of these cases was that Kranner's own follow up to some of his methods indicated that his own techniques were actually making children's lives worse, not better. Some of the children who did the best were frankly just left alone---which says a lot about what we've done for them. So, I don't know what the answer is, but I think it's worth being at least aware of the history, because a lot of it is frankly really dark.
- cogman10 2y ago
  The history of all psychiatry is dark. The problem with pointing at the history and saying, "Look at the terrible history of autism treatment!" is it often treats all current treatments as being equally as horrible as the "Let's try and shock the autism out of these kids". Modern treatment and therapy are not focused on "curing" autism. It's pretty much all about building out life skills. It doesn't do that by slapping the kids for doing the wrong thing. For example, part of my kid's therapy has been around tolerance for brushing teeth. Are you seriously going to try and argue that my kid would be better off if they never went through that therapy? Even though they can now tolerate teeth brushing and even having the dentist poke around in their mouth. Autism is a spectrum and so are the therapies for it. Certainly, kids with more mild forms of autism don't need as much therapy, but it's really frustrating to see "Look at the time a guy tried slapping kids with autism, all therapy is this bad".
yareal 2y ago
As an autistic (yes, medically diagnosed, with obviously difficulties in communication and self care) who has survived to adulthood and is able to care for themselves with support now: fuck you for this "real autism" bullshit. Yes, some people are hit real fucking hard, some of us improve into adulthood, some of us don't get hit that hard in childhood but suffer more as adults. You don't get to decide what real autism is, especially as an outsider, and excluding people who have that diagnosis is shitty, petty behavior. Grow the fuck up.
deleted 2y ago
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cogman10 2y ago

Yeah, I also have a severely autistic child. Unfortunately, I feel like the autism community's search for acceptance often puts on blinders to such individuals. That is particularly frustrating because those vocal about autism acceptance often do it while castigating therapy as if it's always a horrible thing aimed at hiding their true selves. We are working as hard as possible so that our child can hopefully advocate for themselves when we are worm food. If that means "breaking" their true selves to teach them to communicate (speech therapy), or using behavioral therapy to get them to brush their teeth (even though they hate everything about it), so be it. I get why the DSM widened the definition, but what it means to have severe autism is very different from what it means to have mild autism. If my child has deep thoughts, they have very little ability to express them.

nicoburns 2y ago
> If my child has deep thoughts, they have very little ability to express them I'm sympathetic to much of your comment, but the "if" in this sentence really made me wince. Seems to me there's a lot of evidence that almost everyone with autism (including those with very "severe" autism) do indeed have deep intelligent thoughts and just can't communicate them (i.e. that autism is primarily a sensory disorder rather than a cognitive one). The best example I have of this is someone who was entirely non-verbal their entire life, but managed to write an entire book when taught to communicate via pointing at letters on a printed "keyboard" (perhaps someone else can find the reference- it was on HN a few years ago) Which also points to something which I think is really key to helping those with autism: that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively. That might mean writing instead of speaking. Or using mouthwash instead of brushing their teeth. You might well have tried all of these kind of things, but if you haven't then please consider it!
- cogman10 2y ago
  > Seems to me there's a lot of evidence that almost everyone with autism This is a true statement because almost everyone with autism does not have severe autism. Like, I'm sorry, but the research I've read about autism does not paint such a rosy picture about the intellectual capabilities of kids with severe autism. That doesn't mean I'm going to treat my kid poorly because there are cases of kids with severe autism and no intellectual disabilities. That, however, is the exception and not the rule. Severe autism is very frequently accompanied with intellectual disability. [1] I've read the same books authored by kids with no verbal communication. I've heard the stories of lawyers with severe autism. However, those are the exceptions. I certainly hope my kid is one of those exceptions, they are on border of severity which gives me a lot of hope. However, I do have to accept the fact that the most likely outcome for the rest of their life is needing support. It's a fact I've come to terms with over their life as improvements in communication have slowed. > that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively. Sorry, but this severely misunderstands what we work on. It's not about doing the "normal" thing. My child, for example, has extreme food aversion problems. They have a very limited diet which ultimately is not healthy. We do food therapy because expanding their diet and tolerance to eating foods in non-preferred ways is super important. They attend school and unfortunately if the wrong aide is in charge of setting up their meal, they will frequently simply go hungry. I'm not working on "normalizing" my kid. I'm working on getting my kid to be able to advocate their needs and to be self-reliant as much as they are capable. > That might mean writing instead of speaking. Already working on that. They have an AAC device and have been to therapy to learn how to use it for the last year. > Or using mouthwash instead of brushing their teeth. Or sedating them when they inevitably need to have cavities drilled? You can't replace brushing your teeth with mouthwash. Feel free to ask your dentist if that's acceptable on your next visit. [1] https://www.verywellhealth.com/what-is-severe-autism-260044 https://www.verywellhealth.com/what-is-severe-autism-260044
- fragmede 2y ago
  that book is "Autismland: Climbing Out of Autism’s Silent Prison” by Ido Kedar.

CobaltFire 2y ago

As a father of a child in the same situation as yours, who has been personally diagnosed with Aspergers: 100% agree. It’s not something you want. I’m completely over being polite to the people who spout this “I have the symptoms but no diagnosis” line then try to speak about it.

runarberg 2y ago
Curious question: Do psychiatrists still offer the Aspergers diagnostic? I was under the impression they removed it in the DSM-V revision in favor of Autism Spectrum Disorder. A large part of the neuro-devergency community is not fan of the Asperger’s term. The primary reason is that the distinction between Aspergers and Autism was based on outdated—and frankly, problematic—believes around IQ.
- PlutoIsAPlanet 2y ago
  From personal experience, although it was about a decade ago, my doctor referred to it as Aspergers but put it down as high functioning autism. This was in the UK though.
  - runarberg 2y ago
    I’m guessing old habits die hard, especially among the expert classes. I think the ICD-11 standard (which is used in Europe instead of DSM-V) didn’t make the merge until a couple of years ago. Although as far as I’m aware psychiatrists generally use the DSM internally in their work, and mostly refer to ICD for e.g. insurance reasons. Also—since I talking about this—I think many in the neuro-divergence community don’t like High Functioning Autism either (and it is not included in any of the diagnostic tools anyway). The reason cited is that it is rather ableist to call it “high functioning” and would much rather focus on the specif disabilities which needs accommodating.
- CobaltFire 2y ago
  My diagnosis is ~20 years old and would likely be HFA now.

eslaught 2y ago

I'm reading NeuroTribes by Steve Silberman, and while I'm not all the way through, the narrative of there being a "real" autism (and specifically as identified by Kranner) is very problematic at several levels. First, Kranner hired multiple staff who had worked under Asperger and therefore there are questions about priority. But putting that aside, Asperger was actually aware of the more serious autism cases and intentionally hid them to protect his patients from Nazi concentration camps (or just straight up murder in their "psychiatric" facilities), which in the early days targeted many children who would today be diagnosed with autism (with horrible consequences, obviously). Kranner also intentionally set up his referral network to filter out the lower end of the spectrum of cases, such that he missed what Asperger has correctly identified before him: that is, that it's a spectrum. Being a spectrum means that there is an extreme end where things are really, really difficult. I'm sorry to hear you're experiencing that, but that's not to say the spectrum isn't real or there hasn't been a battle to get to the point of recognizing that it exists. As to the GP's comments specifically, NeuroTribes provides a lot of evidence that searches for autism "cures" have almost universally hurt autistic people, and I mean this is a very practical, and frankly horrifying, sense, not in the "my feelings are being hurt" sense. The piercing irony of a lot of these cases was that Kranner's own follow up to some of his methods indicated that his own techniques were actually making children's lives worse, not better. Some of the children who did the best were frankly just left alone---which says a lot about what we've done for them. So, I don't know what the answer is, but I think it's worth being at least aware of the history, because a lot of it is frankly really dark.

cogman10 2y ago
The history of all psychiatry is dark. The problem with pointing at the history and saying, "Look at the terrible history of autism treatment!" is it often treats all current treatments as being equally as horrible as the "Let's try and shock the autism out of these kids". Modern treatment and therapy are not focused on "curing" autism. It's pretty much all about building out life skills. It doesn't do that by slapping the kids for doing the wrong thing. For example, part of my kid's therapy has been around tolerance for brushing teeth. Are you seriously going to try and argue that my kid would be better off if they never went through that therapy? Even though they can now tolerate teeth brushing and even having the dentist poke around in their mouth. Autism is a spectrum and so are the therapies for it. Certainly, kids with more mild forms of autism don't need as much therapy, but it's really frustrating to see "Look at the time a guy tried slapping kids with autism, all therapy is this bad".

yareal 2y ago

As an autistic (yes, medically diagnosed, with obviously difficulties in communication and self care) who has survived to adulthood and is able to care for themselves with support now: fuck you for this "real autism" bullshit. Yes, some people are hit real fucking hard, some of us improve into adulthood, some of us don't get hit that hard in childhood but suffer more as adults. You don't get to decide what real autism is, especially as an outsider, and excluding people who have that diagnosis is shitty, petty behavior. Grow the fuck up.

deleted 2y ago

[deleted]