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.
I wouldn't wish real autism on my worst enemy.
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.
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!
I find the practice abhorrent and somewhat abusive.
https://www.facilitatedcommunication.org/blog/clever-hands-s...
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
> 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...
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.
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.
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.
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.
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.
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.
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...
This was in the UK though.
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.
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.
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.
As far as I know there is no solid evidence he was involved in that, though there seems to be evidence it did happen.
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.
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.
The focus on high IQ is problematic for a number of reasons, including racial and class biases. There are also theoretical implications surrounding intelligence, there is no evidence that there is such a thing called general intelligence let alone that this g-factor can be measured and presented as a single number (why not a matrix or a tensor?).
Having a diagnostic based on such a murky concept as intelligence is indeed very problematic. It is much better to just leave the question of intelligence unanswered when we are diagnosing people with autism. And instead focus on the disabilities each person has. If an autistic person takes an IQ test and measures with a significant deviation (< 70) we can safely say that this person has a learning disability and should be accommodated accordingly. If another autistic person takes the same test and measures normally (~ 100) then that doesn’t add anything to the diagnosis.
All that said, I was curious about it a few months back, and decided to look up how popular IQ tests are among psychologists, and I found out that they are very much falling out of fashion in favor of more focused tools. If a psychologist uses an IQ test, they are much more likely to use the individual subtests and never actually measure the whole IQ of the individual. I didn’t search for how popular they are among psychiatrists though, so IQ might still be a popular tool when making diagnostics, but I would be very surprised if things were any different there, especially now that intelligence is no longer used to differentiate Asperger’s from Autism.
EDIT: I’ve been doing some reading, and I found an excellent secondary source on why some researches and autism advocates want to abolish the term high functioning and in particular to advocate against using IQ to separate autism into sub-categories.
https://www.spectrumnews.org/news/large-study-supports-disca... [PDF]
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.
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.
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".
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.
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
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.
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 ?
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.
It's not about always getting your way or doing things you like, but by the same measure, people should never be forced to 'conform' if it's not critical to society.
It's great that you support your daughter, and that therapy is available. We don't have the same degree of difficulty in our family (myself and daughter both very 'high functioning') but that makes it almost impossible to get support and the world is just typically set on 'breaking our spirit'.
It sounds like you're doing the right thing, but conformance would not be. So many of the most successful and inspiration people, are not those who conformed, but perhaps were more privileged in their opportunities.
However we may disagree in part though, I commend you on your approach and absolutely agree that if it can become a person's choice, so long as it doesn't take advantage of their vulnerability in choosing, it's often for the better.
So much of what is 'boring' or 'tedious' is also contextual. Two different software companies offering the exact same role, may have vastly different expectations and the experience to the employee also vastly different. I don't expect 'fun' all of the time, but I do expect work to be engaging and driven towards the value I bring - if I'm expected to become 'someone else', then there is no point.
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?
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.