[reuben_scratton]

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]

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]

> 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!

[zeroonetwothree]

Unfortunately there is no evidence that “facilitated communication” actually represents the ideas of the nonverbal person. It always involves someone else in control of the communication—if it really worked why would that person need to be there? And tests of privately given information generally find strong evidence against it.

I find the practice abhorrent and somewhat abusive.

https://www.facilitatedcommunication.org/blog/clever-hands-s...

[cogman10]

> 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

[fragmede]

that book is "Autismland: Climbing Out of Autism’s Silent Prison” by Ido Kedar.

[selimthegrim]

Did it use facilitated communication?

[zeroonetwothree]

Yes, so it’s unfortunately completely fake.

> As a double-blind test, her husband suggested Ido tell her about an event that happened without his mother’s presence (e.g., “Tell mom where we went today”). The facilitated message was clear: Don’t test. Apparently, Ido was too anxious to facilitate with his mother when she did not already know the answer

https://www.facilitatedcommunication.org/blog/clever-hands-s...

[CobaltFire]

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.

[mrangle]

There's a lot of over self-diagnosis because autism is the trendiest disorder aside from ADHD. That being said, the majority of accurate adult diagnosis will at least begin and often end with self diagnosis. It will end with it sometimes due to lack of resources and sometimes due to the realization that there is virtually no benefit to formal diagnosis. Unless one needs formal accommodations.

Most undiagnosed child Asperger's, which turns into undiagnosed adult Asperger's, will never be diagnosed by the individual nor a professional. There's a lot of it out there.

[CobaltFire]

I can’t argue with that; my diagnosis was a byproduct of a suicide attempt after a TBI. I doubt I would have pursued or ended up with one otherwise. It also doesn’t do anything at all for me; it’s not like there are accommodations I really need.

My main reaction is due to all the undiagnosed people who swear they have it and attack me for giving my son the help and treatment he needs. It’s an ongoing issue, stemming from ignorance on their part. Hence my lack of patience or sympathy any longer.

[runarberg]

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.

[mrangle]

That there is some kind of large community consensus on anything will always be a fallacy. There's an Ivory Tower, the Media, and then a lot of suffering individuals underneath both. People with issues like to exercise them on a vulnerable population that doesn't need to be lectured on long-standing identity. They need sorely missing help.

The term Asperger's was simply a holdover from the man who brought the condition to light. Period. Anything else is inference, and I hold with malice.

See the fact that the new categories still imply a categorical difference and there is therefore still a categorical difference. In fact, the difference between autism categories is generally massive. Whether or not that difference includes IQ would be down to the individual, but often it will. The term Asperger's having nothing to do with it.

What they didn't like was the implication that Asperger's isn't tightly connected to the other autism categories. It may or may not be. They don't know, either. The renaming was a weird point of focus and highly political. What is true is that almost anyone would have a difficult time observing that Type 1 autism (formerly Asperger's) bears any resemblance to Types 2 and 3.

[runarberg]

This is the first time I heard of Type 1, 2, and 3 Autism. I was under the impression that DSM-V eliminated subtypes from the diagnostic, and favored a multi-dimensional under a single category (maybe it is still an ICD-11 thing, which I think has 8 subcategories).

Wikipedia has this to say:

> Disagreements persist about what should be included as part of the diagnosis, whether there are meaningful subtypes or stages of autism.

And cites a paper [1] claiming:

> The elimination of subcategories was controversial for various reasons, including concerns over the removal of an important part of an individual’s identity and community, specifically related to Asperger’s disorder, as well as concerns over losing services due to an individual no longer meeting more stringent diagnostic criteria. However, the evidence for the existence of subcategories within ASD has continued to be very weak (Miller and Ozonoff 1997, 2000). Furthermore, the shift from multiple subcategories to a single dimension resulted in improved diagnostic specificity and good diagnostic sensitivity, with over 90% of children with PDDs meeting DSM-5 ASD criteria (Huerta et al. 2012; Mandy et al. 2012), and with the remainder likely captured by the new social communication disorder diagnosis.

It looks to me that if they would have kept multiple categories, that would have been a political decision (in particular, identity politics for thous which identify as Asperger’s). It seems like the current single category / multiple dimensions has proven it self to be a much better approach for diagnostic. That is evidence suggest this is a successful change, with both autism advocates and psychiatrists preferring the current single category approach.

1: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8531066/

[runarberg]

I actually went ahead and read both the ICD-11[1] and the DSM-5[2] criterion for Autism Spectrum Disorder. When you referred to Type 1, 2 or 3 Autism what I think you were talking about is actually severity levels in criterion A (social communication and social interaction across multiple contexts) and criterion B (restricted, repetitive patterns of behavior, interests, or activities) of DSM-5. Level 1 requires less accommodations and level 3 requires very substantial support. Note that even level 1 severity requires support and states that without support an autistic person will have impaired social interactions.

These severity levels do not specify intellectual impairment, only social communication impairment and restrictive and repetitive behavior. Intellectual impairment is specified as a boolean with or without. So basically—as I understand it—what was previously described as Asperger’s is basically Autism spectrum Disorder with this boolean set to false.

I actually went ahead and did some further reading and it turns out that people (both psychiatrists, researchers, and autism advocates) are very happy with this arrangement. Intellectual impairment does not correlate (or correlates rather barely) with other required specifications of the disorder (including impaired social communication) and the accommodations required are vastly different.

ICD-11 has 8 subcategories of Autism Spectrum Disorder, and what was previously called Asperger’s is probably 6A02.0 - without disorder of intellectual development and with mild or not impairment of functional language. (pp. 36)

Note that psychiatrists and researchers alike are no fans of the ICD-11 approach, claiming things like:

> As ICD-11 defines ASD in a broad constellation of symptoms or behaviors that can hardly be differentiated from other mental disorders and autism-like traits, the risk of false positive ASD diagnoses increases significantly. This will lead to further limitation of access to ASD-specific services for individuals with a true positive diagnosis of ASD and likewise disadvantages individuals with a false positive diagnosis of ASD due to delays in access to or even missing out on disorder-specific care (e.g., dialectical behavior therapy for borderline personality disorder). Further, since ICD-11 draws particular attention to high-functioning (adult) individuals with ASD, there is concern that “prototypical” as well as low-functioning cases increasingly become neglected in research and clinical practice. [3]

1: https://iris.who.int/bitstream/handle/10665/375767/978924007...

2: https://www.autismalert.org/uploads/PDF/INFO--DSM%205%20Diag...

3: https://www.nature.com/articles/s41380-023-02354-y

[PlutoIsAPlanet]

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]

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]

My diagnosis is ~20 years old and would likely be HFA now.

[runarberg]

I see. I did my bachelors in Psychology ~15 years ago (admittedly did not focus on psychiatry nor pathological psychology). At that point the diagnostic still existed in the DSM-IV, but the term was very much falling out of fashion. I think the (other) APA was drafting DSM-V as I was studying and people knew that Asperger‘s disorder would probably not exist much longer. In my class on pathological psychology I thing Asperger’s wasn’t even mentioned.

I was reading about HFA, and I don’t think that exists in the diagnostic tools either. I think the focus instead is to just diagnose people with autism spectrum disorder and then enlist the disabilities which needs accommodating. The more sever cases has a larger set of disabilities. I’m guessing you would have had a pretty limited set.

I think this is the right choice as there is a little bit risk of ableism in separating a disability as high functioning. The reason we give diagnostic is that some people need accommodation for their disabilities, being accurate about which sets of disabilities need accommodation is better in every way, as opposed to a blanket term like high functioning. The term also risks people perceiving some superiority (intended or not) when it is referred to as such.

[shrimp_emoji]

Believes around IQ are completely accurate and based and they do not care about your feelings.

[runarberg]

Regardless of what you think, the fact is that psychiatrists and psychologists have done the research, and they have found that using IQ to create subcategories of autism is not useful. See your sibling threads for sources.

Of course you are free to disagree with people who’s actual job it is to diagnose autism. But I don’t see what that brings to this conversation.

[selimthegrim]

Which problematic beliefs?

[CobaltFire]

There are claims that Hans Asperger sent children to Nazi clinics for experimentation and/or murder.

As far as I know there is no solid evidence he was involved in that, though there seems to be evidence it did happen.

https://en.m.wikipedia.org/wiki/Hans_Asperger

[runarberg]

That is certainly one of them. However if that was the case, the name would have simply shifted from Asperger’s to High Functioning Autism, which is not the case (neither in the diagnostic tools nor among neuro-diversity advocates).

The problematic beliefs I was referring to was the notion of high IQ. IQ is a very controversial term in psychology, and has a very problematic history. Even though it was initially conceived exactly for the purpose detecting individuals which may have learning disabilities, it has since grown into something which was integral to the eugenics movement. Today we know that IQ has some racial and class biases which we should probably avoid when creating taxonomies which are then used to describe people with disabilities.

[CobaltFire]

I agree but would be a little more precise:

Our current testing to measure IQ has racial and class biases.

I don’t think IQ itself (as a concept) is the issue; it’s our quantification of it that is flawed.

[dragonwriter]

You literally cite the Wikipedia article which describes (with citation) the fact that that was his job in Vienna under the Third Reich.

[CobaltFire]

Fair; I linked that for others evaluation.

I don’t tend to tie what I know to Wikipedia until I’ve done the research; too many things I’m knowledgeable about are blatantly wrong there.

My personal feeling is that it’s likely he did these things. At no point is there more than circumstantial evidence he actually did them. That evidence is strong (his job, it did happen, etc) but I don’t think there’s a signed order or the like that would cement it.

[eslaught]

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]

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".

[kuschku]

To neurotypical people ABA may look successful, but its success comes from breaking the spirit of autistic children. It's just traumatizing you until you stop feeling anything and just learn how to fake the happy reactions expected of you while suffering silently.

In the short term it looks successful, in the long term it's the reason why meltdowns even exist and why so many autists unalive themselves.

I was an extremely autistic kid, barely able to exist in regular school, constantly hitting my head against walls, often nonverbal or having meltdowns.

To teachers, parents, caretakers therapy seemed to "fix" me, but it didn't, it caused even more trauma.

In reality, I didn't need fixing. What truly helped was an environment where I can manage how much stress I experience. Where I can take a quiet break whenever I need to.

20 years later, as an adult, I'm living a genuinely happy life, because I'm not forced to live according to a neurotypical schedule anymore.

[parpfish]

Isn’t almost everything we teach kids some form of “breaking their spirit”?

The first several years of schooling are really just teaching them to sit still, listen, and do a bunch of work you hate instead of playing.

That’s breaking their spirit but it’s essential for them to become adults

[kuschku]

This "breaking their spirit" is precisely why so many adults nowadays have major issues figuring out what they want to do with their life. Every bit of joy has been methodically stripped away from them over years.

That kind of schooling barely works for neurotypical kids, of course it can't work for much more sensitive neurodiverse children.

Schools shouldn't turn lively, active children into depressed obeying robots, and they're not the place to park your children while you're working either.

We need to rethink education as a whole, it's just the more vulnerable children (autists, immigrants, traumatized children) that act like a canary in the coal mine for our school systems.

[mobiuscog]

> That’s breaking their spirit but it’s essential for them to become adults

If being an adult, is a human with a 'broken spirit', that may well explain many of the problems with modern society.

> do a bunch of work you hate

How about we encourage people to use the skills and passions they have, rather than box them into conforming to the vision of the few ?

[iteria]

> How about we encourage people to use the skills and passions they have, rather than box them into conforming to the vision of the few ?

Because life doesn't work like that. If you want to be a doctor you need to undergo a grueling training regimen. I'm deeply passionate about software, but that doesn't change that 80% of my time is spent doing boring, tedious work because that's what work is. Even if you're an artist. I know literally artists. There is no way to have fun all the time doing something productive.

That's why I teach my (admittedly, high functioning) ASD daughter about tolerating non-preferred activities to get what she wants. Yes, she finds having her face painted disgusting, revolting, skin crawling. She willingly endures it every time because she delights in the result. It's her choice every time to sit in a chair and have it done. That's the kind of thing I want her to take from childhood into adulthood because every adult has to do things they hate for the sake of society running and even the care of themselves.

Same way I don't like exercise because it's just actively awful because of my condition, but to not do it is to make myself deteriorate over the long term because of my condition. I want my daughter to be able to make those kinds of decisions. What sucks, but is good for her in the long run. We finally got bathing on the list. No one is going to argue with me that a person who never bathes is a functioning person.

I will continue to "train" my kid. Her life is better for it. Ever since she got therapy she has been happier, more stable, less disturbed by the world, and more able to connect with people both like her and not like her. If any parent could get an outcome like mine from "training" they'd pick it every time. No one is gonna tell me when my kid used to slap herself and cower under chairs is better than my kid who is probably too obsessed with trains and rainbows and spins while she walks when happy. I think I like her spinning better than her cowering.

[parpfish]

I don’t know how you can be a well adjusted adult unless somebody instills some discipline

[cogman10]

> 20 years later, as an adult, I'm living a genuinely happy life, because I'm not forced to live according to a neurotypical schedule anymore.

Perhaps you can appreciate that 20 years is a long time and therapy/medicine has changed a lot since then.

I'm really sorry that therapy was terrible for you. That sucks. However, you do need to realize that not all therapy is ABA and that ABA itself has changed substantially in the last 20 years. A lot of the therapy that my kid gets has built in breaks for the kid to make sure they aren't overwhelmed, there are certainly days when the session is basically "we couldn't do anything today because your child seems overwhelmed".

School is also different. My kid's school has a dedicated room for kids to volunarily go to when they are feeling overstimulated. Most IEPs (US) provision that for kids primarily in general education they get pull outs as needed if they are feeling (or appear to be) overstimulated. My kid wears headphones most of the day because noise bothers them.

The goals of my kid's therapies are life skills, Communication and personal care. We aren't trying to make them not autistic, we are trying to make sure they can brush their teeth and dress themselves. Do you really think those sorts of therapy goals should be abandoned?

[yareal]

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.