you say theres no severity levels with autism but

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naturalplastic
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02 Feb 2023, 10:21 am

Mona Pereth wrote:
naturalplastic wrote:
As applied to autistics the term is a rough sketch, and a piece of shorthand. But its better than nothing because the term became necessary in 1994 when they expanded the range of people who are classified as "autistic" to include folks (like me) who blend into society better than do classic Kanner type autistics who are often institutionalized for life.

Actually, even Kanner's autism always did include some "high functioning" autistic people. See Leo Kanner's original paper (PDF). And the very first child he diagnosed with autism eventually graduated from college and got a job in a bank. (See Donald Triplett, Wikipedia.)


Yeah, yeah, yeah. Someone always says that.

But the designation is MORE needed now in the post 1994 era (before that niether I, nor most of the folks on this website wouldve been classified as 'autistic'). Which is why they made it official. "high functioning" and Low and middle were never official labels until now. Now they use "levels" one, two, and three, which mean the same thing as high functioning, middle, and low. So now it IS for practical purposes, and official diagnostic category.



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02 Feb 2023, 10:46 pm

It all boils down to opinion, just like the puzzle piece vs. the infinity sign, or ABA vs. no ABA.

I've gone to an autistic support meeting several times; each time "Jimmy" is there: a man in his 30s who always seems detached cognitively from other people in the room. If an autistic is avoiding eye contact BUT paying attention, you can tell. Jimmy's eyes are all over the place, and it's obvious so is his mind -- he's not bored; he's in his own world, far away from what's happening in the room.

His aide leads him into the room by the hand. He can't speak, nothing. The aide has a "keyboard" with letters, holds Jimmy's hand and "types" Jimmy's responses to questions. But while Jimmy is allegedly choosing, all by himself, letters to spell out words, his eyes are way off to the side. This is NOT a touch-keypad. It's flat. So there's no way Jimmy could know which letters his fingers are touching -- and remember, the aide is actually doing the touching. It's called facilitated communication and is controversial. Studies have disproven its validity (e.g., the client was asked a question with a cue card that was not visible to the aide. In every case, the "answer" was wrong).

I asked to hold Jimmy's hand (not letting on that I didn't believe in FC) so we could communicate. Holding his hand (at the wrist), I asked what his favorite animal was. His hand moved in a way that clearly seemed like the random movement it would make if being held and suspended above something (the keyboard). And his eyes, as always, were NOT on the keyboard.

He never makes hand gestures like a normal person would whose barrier is a foreign language.

It seems accurate to say that Jimmy is "more" autistic than me. Of course, I'm L1 and he's L3, requiring full-time supervision. How can anyone say we both have autism equally?



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02 Feb 2023, 11:14 pm

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It seems accurate to say that Jimmy is "more" autistic than me. Of course, I'm L1 and he's L3, requiring full-time supervision. How can anyone say we both have autism equally?


This. He's definitely low-functioning, no matter how intelligent he is.

If I were at that support group I'd be like a shy neurotypical. I get shy when around people I don't know very well but I still engage socially, by smiling, making eye contact, being aware of everyone in the room, speaking when I'm spoken to and replying appropriately, etc. I don't do the common autistic stims like hand-flapping or rocking, and once I'm comfortable with people I'd be chatting and enjoying myself.
I am in a steady relationship with a neurotypical man, and I'm employed, and even on my "worst days" I'm still able to communicate and function socially. I don't really have meltdowns, unless you can call panic attacks meltdowns. My panic attacks typically involve excessive crying and gasping for breath, usually triggered by something that has made me anxious, like when my boyfriend gets drunk and scary, or something that has made me angry, like something reminding me that I'm a social failure and then getting angry with myself. I don't have meltdowns from sensory overload. And I can naturally communicate during the worst of my panic attacks. In fact communicating my feelings to someone helps me a lot.

That is mild and/or high-functioning. Or, as I prefer to call it, "too autistic to be NT, too NT to be autistic". Or something like that.


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naturalplastic
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03 Feb 2023, 12:40 am

Agree with Elgee.

Also thats interesting that he actually knows a person involved in "facilitated communication."

Have seen stories on that on 60 Minutes back in the Nineties. Am surprised that its still being done. Always looked absurd to me on 60 minutes, and I assumed that it was discredited and abandoned by now.



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03 Feb 2023, 7:06 am

Elgee wrote:
It all boils down to opinion, just like the puzzle piece vs. the infinity sign, or ABA vs. no ABA.

I've gone to an autistic support meeting several times; each time "Jimmy" is there: a man in his 30s who always seems detached cognitively from other people in the room. If an autistic is avoiding eye contact BUT paying attention, you can tell. Jimmy's eyes are all over the place, and it's obvious so is his mind -- he's not bored; he's in his own world, far away from what's happening in the room.

His aide leads him into the room by the hand. He can't speak, nothing. The aide has a "keyboard" with letters, holds Jimmy's hand and "types" Jimmy's responses to questions. But while Jimmy is allegedly choosing, all by himself, letters to spell out words, his eyes are way off to the side. This is NOT a touch-keypad. It's flat. So there's no way Jimmy could know which letters his fingers are touching -- and remember, the aide is actually doing the touching. It's called facilitated communication and is controversial. Studies have disproven its validity (e.g., the client was asked a question with a cue card that was not visible to the aide. In every case, the "answer" was wrong).

I asked to hold Jimmy's hand (not letting on that I didn't believe in FC) so we could communicate. Holding his hand (at the wrist), I asked what his favorite animal was. His hand moved in a way that clearly seemed like the random movement it would make if being held and suspended above something (the keyboard). And his eyes, as always, were NOT on the keyboard.

He never makes hand gestures like a normal person would whose barrier is a foreign language.

It seems accurate to say that Jimmy is "more" autistic than me. Of course, I'm L1 and he's L3, requiring full-time supervision. How can anyone say we both have autism equally?

Facilitated communication is not controversial, it's disproved. Only the fact that some make money on families holding to any hope keeps it running. It's snake oil.

I don't believe I met anyone who claims all autism cases are equal. The main criticism to the concept of "autism levels" I heard was that it does not reflect complexity and multi-dimensionality of autism spectrum.


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03 Feb 2023, 8:34 am

When it comes to "facilitated communication," one wonders who those who were "facilitated" came up with what they came up with. Some of those who were "facilitated" seemed to have a great deal of imagination (if what they wrote on the computer was not true).

There were people who were wrongly accused (and convicted) of sexual abuse and rape based upon "facilitated communication."

The things these so-called "low-functioning" autistic people came up with! Either great novels, or real tragedies.



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03 Feb 2023, 10:12 am

naturalplastic wrote:
Agree with Elgee.

Also thats interesting that he actually knows a person involved in "facilitated communication."

Have seen stories on that on 60 Minutes back in the Nineties. Am surprised that its still being done. Always looked absurd to me on 60 minutes, and I assumed that it was discredited and abandoned by now.


I'm a woman :lol:



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03 Feb 2023, 10:20 am

kraftiekortie wrote:
When it comes to "facilitated communication," one wonders who those who were "facilitated" came up with what they came up with. Some of those who were "facilitated" seemed to have a great deal of imagination (if what they wrote on the computer was not true).

There were people who were wrongly accused (and convicted) of sexual abuse and rape based upon "facilitated communication."

The things these so-called "low-functioning" autistic people came up with! Either great novels, or real tragedies.


But the "facilitatee" does not come up with it. The aide either consciously or subconsciously moves the client's hand around, poking client's fingers to letters to spell things. Or, the client's hand will naturally move as it hangs limply over the keyboard, and wherever its index finger is hanging nearest, the aide will press it. The aide then either willfully or subconsciously moves the hand to the next logical letter. So if the client is asked what's your favorite food? The aide knows its pizza and steak. The hand may be suspended close enough to a p or s, and gets pointed on one of those letters. Next letter will be an "i" or "t." The aide may not even realize they're willfully facilitating.

Jimmy is able-bodied, but when asked to stand closer to the group for a photo, he stayed put, eyes all over the place, swaying side to side. The aide took him by the arms and "walked" him to the group. Yet Jimmy supposedly spells out full sentences on the keyboard??? If the facilitatee is really spelling, why would they need an aide's hand on their wrist? Jimmy's arms, hands and fingers are fully functioning, deft enough to reach into a small bag of chips and pluck one out and bring it to his mouth. Yet he needs an aide to guide his hand? FC is a crock.



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03 Feb 2023, 10:36 am

I certainly don’t believe these people who were charged under data gathered from FC should have been charged and convicted based upon FC alone.

This defies common sense.

Common sense says FC is a crock. I certainly wouldn’t go by it.

But the stuff that was produced by FC back in the 90s was so florid! At the very least, the facilitators went through a lot of stuff. If they actually led these autistic people to relay their OWN stories, one should wonder about the motivation for this.



Last edited by kraftiekortie on 03 Feb 2023, 10:47 am, edited 1 time in total.

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03 Feb 2023, 10:44 am

When I watch videos on YouTube of severely autistic children or adults, their meltdowns seem sort of in intervals. I can't explain it. One time I saw a video of an autistic 8-year-old, and he was in "meltdown mode". He had ear defenders on and kept flapping his hands and shouting. He was verbal but it was noted in the description that he had echolalia and couldn't string sentences together properly. During this meltdown he kept screaming words, and looked angry, then he went calm for a few moments, then he screamed words again and flapped his hands, then went calm.
His parents described him as low-functioning in the description. He attended a special school for children similar to him.

When I was 8 I was as articulate as my NT peers. During a meltdown (although they were always called tempers or tantrums in my house) I was similar to a typical 3-year-old; laying on the floor crying but also still being able to speak clearly. There was no hand-flapping or rocking involved, and I didn't go calm in between intervals. And these temper tantrums were usually triggered by not getting my way, although they didn't occur every time I didn't get my way.
If I had a tantrum on a school morning, for whatever reason, I was still able to go to school and I was always OK once I got to school and was just as able to mix with my classmates as I would be without having a tantrum or meltdown beforehand.

My issues were mostly behavioural as a kid, such as poor emotional regulation, tantrums, hyperactivity, impulsiveness and even being hyper-social. The only autistic trait I really had was being anxious of loud noises. Then when I hit my adolescent years I had social problems at school not fitting in with my peers and being excluded and feeling lonely and isolated. I didn't have alexethemia as a kid but I went through a short phase of having it when I was at the peak of puberty (age 12-14), but that's a different topic.


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03 Feb 2023, 10:53 am

Mostly, I threw “regular” tantrums as a kid, too…up till about age 12.



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03 Feb 2023, 11:14 am

My worst public one was on the London Bridge - I went totally batshit from agoraphobia, sensory (sunlight), and the stress of travel. The final straw was when my mum wouldn't buy me something I really wanted. I'm surprised I didn't get arrested for the way I freaked out. I was 13.

Oh and there's the time I threw the dental sunglasses at the wall and collapsed on the floor calling the dentist a string of curse words. Or the time I threw a jar of salsa at my stone floor.

I've had some doozies. Thank goodness they've all but stopped now that I don't deal with the outside world as much as I used to.



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03 Feb 2023, 11:47 am

I remember having a tantrum in public when I was 11. I was with my family visiting a castle, and there weren't really anyone else around, and I was behaving with a sulky attitude because castles didn't interest me and I was bored. When my dad got angry with me my mum said to him "she's got Asperger's, she can't help it", and that totally triggered me, because everybody was forbidden to mention that word in front of me. I stamped my foot angrily and pushed my poor mum (not enough to make her fall over) and I shouted and swore.

I remember having another tantrum, also being 11, when I was on vacation with my family. We stayed in a villa and I wanted my brother to sleep in the same room as me (as there were two beds) but he wanted to sleep in the third bedroom. I threw the biggest tantrum ever; kicking the wall and screaming until I exhausted myself out and then went to sleep. I just thought that by throwing a tantrum it might convince my brother to change his mind and sleep in my room but it didn't work.
But I behaved well for the rest of the vacation, as I loved being on vacation and didn't find them daunting or overwhelming. I just didn't want to sleep on my own but after the first night I accepted it and didn't fuss any more about it.


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03 Feb 2023, 12:45 pm

I had only one meltdown in my entire life, when I was a preschooler. Tantrums, meltdowns, acting out, call it what you may, but this behavior was absolutely forbidden in the house I grew up in. My mother, bless her, was an authoritarian and had ZERO TOLERANCE for "tantrums." None of my five siblings had them either, or "acted out." I'm wondering if this atmosphere was why I never had meltdowns, or if it's innately part of my "calmer" autistic wiring.

My mother always believed that discipline was No. 1. She'd tell people that the most important thing a mother can do for her child is let the child know who's boss. She was controlling and Alpha. I firmly believe that growing up under this influence could prevent meltdowns and tantrums in a Level 1 or HF autistic child.

Look. A puppy can be trained to sit still while tennis balls bounce by. Animals in the wild promptly control their young when they start getting too feisty. I've watched much footage of animals doing this such as wolves, lionesses, hippos and elephants. So it stands to reason that an Alpha mom with a dominant personality who thinks that the most important thing a mom can do for her child is to show who's BOSS, would be capable of "meltdown-proofing" a HF autistic child (whom, at that time, she didn't even know was autistic; I was diagnosed last year, and I actually believe my mother was on the spectrum).

Am I less autistic because, damn, seems like all the autistics around me have a history of meltdowns, and I feel like the oddball out.



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03 Feb 2023, 1:01 pm

Joe90 wrote:

I remember having another tantrum, also being 11, when I was on vacation with my family. We stayed in a villa and I wanted my brother to sleep in the same room as me (as there were two beds) but he wanted to sleep in the third bedroom. I threw the biggest tantrum ever; kicking the wall and screaming until I exhausted myself out and then went to sleep. I just thought that by throwing a tantrum it might convince my brother to change his mind and sleep in my room but it didn't work.


That does sound more like a tantrum than a meltdown, because there was something specific you wanted.

I had a meltdown when I was 7 or 8 and had to share a bed with my mother in a hotel. I've never been able to sleep with anyone in my bed because of sensory -- if they dare to breathe, move, snore, or touch me with their foot by mistake I'll go bonko. I think my mother must have done one of those things but I was also having a trauma nightmare when the sensory thing woke me up. I sat up in bed and beat her with my fists thinking she was the nightmare person, but also overwhelmed by the sensory annoyance of sharing a bed. My dad had to pull me off of her.

I've told this story before and it's one I'm horribly ashamed of. My mother says she doesn't remember it but I'm sure she does. Meltdowns can lead to such terrible guilt and shame. I've felt like a terrible person ever since, but I'm mute so I was never able to tell her I was sorry.



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04 Feb 2023, 3:25 pm

magz wrote:
Facilitated communication is not controversial, it's disproved. Only the fact that some make money on families holding to any hope keeps it running. It's snake oil.

There are also some methods, such as the Rapid Prompting Method and Spelling To Communicate, that are alleged by their detractors to be just variants of FC and therefore not worth any scientific study. But, as far as I can tell, this is not actually the case.

Personally I think these methods should be subjected to some rigorous experiments to determine authorship, rather than summarily dismissed on the grounds of alleged resemblances to FC.

magz wrote:
I don't believe I met anyone who claims all autism cases are equal. The main criticism to the concept of "autism levels" I heard was that it does not reflect complexity and multi-dimensionality of autism spectrum.

The idea that some of us claim we are all equally disabled is a very common straw-man argument, however.


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