you say theres no severity levels with autism but

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Mona Pereth
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04 Feb 2023, 3:33 pm

naturalplastic wrote:
Mona Pereth wrote:
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.

Actually they are not quite the same.

In the old days, "high functioning" vs. "low-functioning" was based solely on IQ test scores. It was not an overall measure of someone's ability to fit in with mainstream society.

These days the autism "severity" levels are NOT based solely or primarily on whether or not the person is intellectually disabled. Rather, intellectual disability is treated as a separate dimension from autism.


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16 Feb 2023, 9:57 am

IsabellaLinton wrote:
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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.


This reminds me of a time when I upset the whole household when I was about 12. It started off as a peaceful Sunday morning. My mum and dad wanted to go shopping at the mall, and they asked me if I wanted to come. I said no, but then I asked if my brother was going, and they said no, as he was still in bed. The computer was in his room and he was in bed, and being a teenager he never let me in his room unless he wasn't there, so I was disappointed that I couldn't play on the computer while my parents were gone. I couldn't seem to handle the disappointment, so I started yelling and shouting "IT'S NOT FAIR!" and all that. It spiraled out of control, and my dad took his shoes off and yelled "we're not going now!" and slammed off into the kitchen. Then my mum felt disappointed for not going to the mall (she couldn't drive), so she yelled at me through gritted teeth "we can't go out now, all because YOU want to go on the computer!" And she slammed off too.
I felt guilty after that. These tantrums often occured in our house. I'd react before thinking. That was my behaviour.


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16 Feb 2023, 11:18 am

Caz72 wrote:
i feel there is levels of severity across the autism spectrum because im 50 but still havent/cant learn new many social skills but many autistics half my age understand more social things than me

and im exposed to social interaction every day at work with the public but i still cant seem to learn social rules although i do mask but theres a lot of social things i still dont understand that other autistics half my age do

so is this proof that there is severity levels of autism like people who are on the mild end of the spectrum are more likely to learn social rules quicker and even be born with some until it becomes natural while others of us just cant get the hang of it even after a lot of experience in life?
Your age has nothing to do with it. It's about how your brain processes information.


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16 Feb 2023, 11:19 am

Recidivist wrote:
Image

Image
Love this!


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16 Feb 2023, 11:25 am

Joe90 wrote:
I feel "less autistic". I don't believe severity levels are true for everyone but they do exist. Some people are "severe", as in being non-verbal and being unable to look after themselves independently, even if they are better than the rest of us at building a puzzle, they're still low-functioning.

I think it depends more on the social know-how and how able one generally is at taking part in NT society and how well you can communicate articulately to others, and how obvious your autism is or isn't, is what usually defines where abouts on the spectrum an individual lays. Some people with autism are just socially awkward, while others are socially clueless (although they are not the only two existing descriptions).

I suffer with anxiety and depression but this never affects my ability to communicate and function. If I have a panic attack I don't suddenly go into my own world or become unaware of my environment or become unable to speak.

I know the OP is a bus-driver and is clever with memorising routes and stuff like that, but she still seems more autistic than me. So I'd say she's HFA, or moderately functioning. Moderate (in an autism context) usually means high-functioning in some ways but low-functioning in other ways.

It's more complex than I can ever describe. I know autism isn't binary, but it is binary for some of us, as some of us are extremely mild and others are extremely severe.
I am confused because I thought I read in some of your other posts on other threads that you said that you are not actually Autistic. Sorry, I am just confused. Can you clarify for me? Thank you. :heart:


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16 Feb 2023, 11:26 am

IsabellaLinton wrote:
Support levels are described and defined in the DSM, and identified in our diagnostic reports.
I don't understand why people say there are no levels, when there are.
The levels are used for insurance purposes to identify whether or not we're at risk alone.

Levels are based on our testing scores and how we compare to other autistic people.
We're ranked in all the areas that Recidivist showed in the circle graphs.
It's not considered linear because a diagnosis also considers our strengths / spiky profiles.

Moderate doesn't mean some HFA and some Low, mixed together.
It means the person has a need for significant support in most or all areas.
That support doesn't have to mean we have an aide.
It usually means we need assistive equipment like tinted glasses, headphones, etc.
Maybe we need a service dog or OT therapy to work on Alexithymia or Interoception.
It doesn't mean we can't survive without this support either, since many of us have none.

Levels do fluctuate for each person depending on their fatigue, their comorbids, etc.
They don't seem to fluctuate as much as people think though.
YES!! !!


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16 Feb 2023, 11:33 am

IsabellaLinton wrote:
Image


Here's the current DSM chart.

Autistic people actually have two levels: one for Social Communication, and one for RRB.

I have Level 2 / Level 2.

Levels aren't determined subjectively, but by the collection of objective data and quantitative test scores.
The problem I have with this DSM severity chart is that it only talks about severity levels in three general areas, social interactions, special interests, and stimming. It's so general that it doesn't take into account so many ways that severity can look or present or the different ways that different kinds of severity can affect an Autistic person in very critical ways. So, people like me get completely dismissed when the areas that I am severe in are so critical that they can actually be life threatening.


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16 Feb 2023, 11:36 am

Joe90 wrote:
I don't seem to have any of those levels. Does it mean I don't have autism? :scratch:
It is possible that you might not be Autistic. From your questions and responses on some of your other posts on other threads, it seems that you don't experience a lot of the traits and symptoms that are classic to Autism. Of course, we can't tell if you really are or not, but you might need to look into it further just to be sure if that is important to you. But whether you are Autistic or not, you are our Joe, we love you, and we will have you any way you are. :heart:


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Last edited by skibum on 16 Feb 2023, 11:37 am, edited 1 time in total.

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16 Feb 2023, 11:36 am

^ ^ I agree- but my report itself shows my level of risk for each test / ability. I wouldn’t want to carry my report around bc it’s 30 pages but at least everything is specified.


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16 Feb 2023, 11:40 am

IsabellaLinton wrote:
^ ^ I agree- but my report itself shows my level of risk for each test / ability. I wouldn’t want to carry my report around bc it’s 30 pages but at least everything is specified.
LOL! Can you imagine if we had to carry our diagnostic reports everywhere we went?! That would be ridiculous. But that is why it's so important that people understand that severity can look so many different ways. We shouldn't be denied help and services that we need just because we don't look the part. Hopefully things will start to change as we tell our stories.


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16 Feb 2023, 11:43 am

Quote:
I am confused because I thought I read in some of your other posts on other threads that you said that you are not actually Autistic. Sorry, I am just confused. Can you clarify for me? Thank you. :heart:


You're just as confused as me. I've never been able to know who I really am. :lol:

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Your age has nothing to do with it. It's about how your brain processes information.


Sometimes it says (in information about autism) that a lot of autistic people learn as they age, so I always thought that my good social skills are because of age and experience, and I always thought the less autistic people have learnt social skills through experience the more "severe" or "low-functioning" they are.


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16 Feb 2023, 11:49 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?
If I have skin cancer and my brother has lung cancer, do we both have cancer?

It's not a question of equality. No one is more Autistic than anyone else. You don't have degrees of Autism. Autism is Autism. Are people affected by their traits differently? Yes. Do people need different types of support? Yes. Does that make some people have a lot of Autism and others have only a little Autism? No. That is not how it works. We can't look at it as equality. Looking at it as equality is very dangerous because when people think in those terms, you develop a culture where people who don't look the part but have severity in areas that are not readily and easily visible at first glance, get told that they don't need or deserve the supports that they need because Jimmy's severity is more obvious and visible.

Each Autistic person's support needs have to be evaluated individually and each person's support needs have to be taken as seriously as any other person's support needs. That is why you can't look at Autism as degrees of Autism. My support needs are just as important as Jimmy's even though I don't look anything like Jimmy. But I can't get support for my needs because I don't look anything like Jimmy.


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Last edited by skibum on 16 Feb 2023, 11:54 am, edited 1 time in total.

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16 Feb 2023, 11:53 am

skibum wrote:
Joe90 wrote:
I don't seem to have any of those levels. Does it mean I don't have autism? :scratch:
It is possible that you might not be Autistic. From your questions and responses on some of your other posts on other threads, it seems that you don't experience a lot of the traits and symptoms that are classic to Autism. Of course, we can't tell if you really are or not, but you might need to look into it further just to be sure if that is important to you. But whether you are Autistic or not, you are our Joe, we love you, and we will have you any way you are. :heart:


Thank you. :heart:
When I received my results of my ADHD assessment, the person who assessed me said that they feel I still have autism too.
I feel most of the out-of-character autistic behaviours I very temporarily showed when I was 4 on my first week of school was down to glue ear. I suffered terribly with my hearing when I was around age 4-5, and I had to have several operations. I read somewhere that small children can behave erratically (couldn't think of another word) when suffering with glue ear.


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16 Feb 2023, 11:56 am

Joe90 wrote:
skibum wrote:
Joe90 wrote:
I don't seem to have any of those levels. Does it mean I don't have autism? :scratch:
It is possible that you might not be Autistic. From your questions and responses on some of your other posts on other threads, it seems that you don't experience a lot of the traits and symptoms that are classic to Autism. Of course, we can't tell if you really are or not, but you might need to look into it further just to be sure if that is important to you. But whether you are Autistic or not, you are our Joe, we love you, and we will have you any way you are. :heart:


Thank you. :heart:
When I received my results of my ADHD assessment, the person who assessed me said that they feel I still have autism too.
I feel most of the out-of-character autistic behaviours I very temporarily showed when I was 4 on my first week of school was down to glue ear. I suffered terribly with my hearing when I was around age 4-5, and I had to have several operations. I read somewhere that small children can behave erratically (couldn't think of another word) when suffering with glue ear.
It seems possible that the person who told you that you still had Autism may have misdiagnosed you. Do you think it would help you to find out for sure?


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16 Feb 2023, 11:59 am

Joe90 wrote:
Quote:
I am confused because I thought I read in some of your other posts on other threads that you said that you are not actually Autistic. Sorry, I am just confused. Can you clarify for me? Thank you. :heart:


You're just as confused as me. I've never been able to know who I really am. :lol:

Quote:
Your age has nothing to do with it. It's about how your brain processes information.


Sometimes it says (in information about autism) that a lot of autistic people learn as they age, so I always thought that my good social skills are because of age and experience, and I always thought the less autistic people have learnt social skills through experience the more "severe" or "low-functioning" they are.
There are definitely social skills that you can learn by rote but one thing that cannot be easily learned, which most Autistic people really struggle with, is social intuition, which is mistakenly called social awareness. Even if we are taught some of those skills, we have no ability to learn them as well as an nt does. That would be literally like teaching a blind person to see. You can't teach a blind person to see with therapy and sight lessons. It's not physically possible.


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16 Feb 2023, 12:06 pm

Joe90 wrote:
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.
Your description of tantrums when you were a kid because you didn't get your way is very important. An Autistic meltdown is NEVER caused because the person didn't get his way. It is always a neurological response to a stimuli that is overwhelming the brain function. That is a very important clue.

Anxiety over loud noises is not a diagnostic criteria for Autism. It is very common in Autism but it is not considered an Autistic trait for a diagnosis. This is also an important clue for you. I think it would be really good for you to be evaluated again by someone who knows what they are doing. I know that that would definitely give you answers and peace of mind if you able to afford the diagnosis.


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