[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...