What do the different levels of autism mean?

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Ilikemusic
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06 Jan 2019, 12:15 pm

I was diagnosed with level 2--3 autism when I was 3, however I didnt get to know that until I was 10. I didnt speak til I was 5. Before I was diagnosed my parents thought I was deaf because I didnt respond to my name or talk.

I can talk in complete sentences now but most people comment on the way I speak. I apparently speak in a way that is hard to understand. I have a hard time with conversations. Eye contact is uncomfortable for me. I try though. I just want to look down or away. Sometimes I start stimming when Im talking to people. I will flap my hands or open and close my fist or pull on my hair depending on how I feel.

I like to spin too. It feels really good. A lot of people dont understand it.

Also,people think Im weird even when I try to fit in. Im not very good at good first impressions.

I have a routine. I have stress when it isnt being followed. However I need assistance with some of the stuff in my routine like brushing my teeth or my homework.

I have ADHD as well which adds more difficulties such as an inability to sit completely still or stick to one task. When I start doing multiple things at the same time, I get really overwhelmed.

I have a younger brother with level 1 Autism and No ADHD. He helps me out which is awesome because he understands what having autism is like.
We both have sensory issues. He helps me with my homework. He also talks on my behalf alot when we are out together, which is helpful.

Im confused about the levels though.


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06 Jan 2019, 2:28 pm

Making Sense of the 3 Levels of Autism

Quote:
Here are the three levels, as described in the DSM:

ASD Level 3: “Requiring Very Substantial Support”

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

ASD Level 2: “Requiring Substantial Support”

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks in simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.

Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.

ASD Level 1: “Requiring Support”

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.


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LaetiBlabla
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06 Jan 2019, 8:25 pm

"Levels of autism" doesn't mean anything. It is just that NTs like to put everything on a scale cause it helps them to judge who is superior and who is inferior. In their paradigm, NTs being superior to Autism as an obvious presupposition, and the value of their person being in all fields in average superior than the value of 80% of the other NTs, as a surprising effect of their mental scales.



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06 Jan 2019, 9:22 pm

LaetiBlabla wrote:
"Levels of autism" doesn't mean anything. It is just that NTs like to put everything on a scale cause it helps them to judge who is superior and who is inferior. In their paradigm, NTs being superior to Autism as an obvious presupposition, and the value of their person being in all fields in average superior than the value of 80% of the other NTs, as a surprising effect of their mental scales.


Thanks for succinctly putting this into words. These levels are defined specifically from the standpoint of deficits and what a person's ASD means to others. There are many dimensions of strengths and deficits and just because some of us may be able to learn to function in specific areas doesn't mean that we don't struggle in others. I was in a program from age 3 to 4, until I started speaking, and then got no further support. So for example I learned to function very well academically and later professionally, but never developed stable relationships or friendships. From an NT perspective, from the perspective of others I wasn't a problem needing fixing - e.g. many would have envied my career - but from my own perspective, it was a restricted and painful way to live, and looking back over my life, it has been quite limited (no family, no lasting friendships, no hobbies, etc.). Some support could have made a huge difference. On the positive side, I guess, is that it really pushed me and toughened me. There's just no way to meaningfully rank autistics (or NTs for that matter) using a single scale.



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07 Jan 2019, 3:15 am

A thing with being level 2-3 is the level of help needed with routine things. Along with being called level a 2-3 person I am also called a significant special needs person. It's cool you have an understanding brother to help you out and speaks on your behalf. I have a cousin I was raised with like that. He doesn't have autism be he understands me real well.



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07 Jan 2019, 10:00 am

EzraS wrote:
A thing with being level 2-3 is the level of help needed with routine things. Along with being called level a 2-3 person I am also called a significant special needs person. It's cool you have an understanding brother to help you out and speaks on your behalf. I have a cousin I was raised with like that. He doesn't have autism be he understands me real well.


Yeah. Im called a special needs person too. Im so glad to have my brother. My other siblings dont really understand. He likes to talk on my behalf a lot. He likes talking. He can talk for hours about a lot of things. Its sort of soothing to listen to. I cant sit still for long though. I have to walk around alot because if I dont I end up feeling really irritable. He doesnt stim as much as I do though. He just taps his foot or flaps his hands once in a while. I stim everyday. It helps me cope with stress and emotions. My brother is also good with sarcasm and can tell me when someone is being sarcastic. Its really awesome. Most people dont include me in stuff because I am difficult to talk to sometimes apparently.


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07 Jan 2019, 1:24 pm

I suppose I'm level 1. Simply because:-

-I learnt to talk at the average age (no delays)
-I was potty-trained by 2 years old
-My ASD was completely unnoticeable as a toddler and young child (probably because I made eye contact naturally along with other things)
-I never displayed peculiar repetitive behaviour, narrow special interests or disinterest in other children
-With educational support at school I fitted in to mainstream school all the way through
-I can do things for myself and live independently
-You wouldn't really know I had an ASD if you met me, you'd just think I'm an introverted NT with a few quirks that aren't stereotypically autistic (but I do have ADHD too)
-I do get stressed and anxious but I can talk about it to others and find solutions
-I am very openly communicative about my feelings
-I can have conversations, although I'm not the best at making friends with NTs but I can still get on with most NT people
-I have self-awareness, like when I'm out I don't stim or do anything else that could attract funny looks (I don't stim anyway, and if I do they aren't 'autistic stims', as in not repetitive or unusual)
-I like to keep up with gossip and being involved emotionally is important to me
-I don't have special interests that I talk nonstop about. I used to have obsessions with certain people, and I knew that people got bored when I talked about them but I had impulsive urges to talk about them
-I can understand jokes and sarcasm and can be on the same 'page' as the group most of the time
-I used to have outbursts before I went on Sertraline, but during an outburst I was very verbal and didn't stim, I would just stomp around slamming doors and arguing with others in the house, more like an NT with poor anger management
-I don't always like change to my life what is out of my control, like a life-changing disruption, but then again most people don't. But I don't have a rigid routine; I work evenings until late and I don't get upset at what time I have meals or what I have for meals, the same goes with sleeping. In fact I liked the Christmas period because it was a 'change of routine' and I liked it. I never used to like routine change as a teenager; over the Christmas period when everybody in the house was off work at the same time I kept on having outbursts because my mood was low and I kept getting frustrated
-I can maintain a romantic relationship with my partner like it's a natural thing (like my relationship with my family)
-I like being touched, doesn't matter what mood I'm in. When I used to have outbursts being touched (like cuddled) actually helped calm me down because I felt like I was understood.


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07 Jan 2019, 2:26 pm

Joe90 wrote:
I suppose I'm level 1. Simply because:-

-I learnt to talk at the average age (no delays)
-I was potty-trained by 2 years old
-My ASD was completely unnoticeable as a toddler and young child (probably because I made eye contact naturally along with other things)
-I never displayed peculiar repetitive behaviour, narrow special interests or disinterest in other children
-With educational support at school I fitted in to mainstream school all the way through
-I can do things for myself and live independently
-You wouldn't really know I had an ASD if you met me, you'd just think I'm an introverted NT with a few quirks that aren't stereotypically autistic (but I do have ADHD too)
-I do get stressed and anxious but I can talk about it to others and find solutions
-I am very openly communicative about my feelings
-I can have conversations, although I'm not the best at making friends with NTs but I can still get on with most NT people
-I have self-awareness, like when I'm out I don't stim or do anything else that could attract funny looks (I don't stim anyway, and if I do they aren't 'autistic stims', as in not repetitive or unusual)
-I like to keep up with gossip and being involved emotionally is important to me
-I don't have special interests that I talk nonstop about. I used to have obsessions with certain people, and I knew that people got bored when I talked about them but I had impulsive urges to talk about them
-I can understand jokes and sarcasm and can be on the same 'page' as the group most of the time
-I used to have outbursts before I went on Sertraline, but during an outburst I was very verbal and didn't stim, I would just stomp around slamming doors and arguing with others in the house, more like an NT with poor anger management
-I don't always like change to my life what is out of my control, like a life-changing disruption, but then again most people don't. But I don't have a rigid routine; I work evenings until late and I don't get upset at what time I have meals or what I have for meals, the same goes with sleeping. In fact I liked the Christmas period because it was a 'change of routine' and I liked it. I never used to like routine change as a teenager; over the Christmas period when everybody in the house was off work at the same time I kept on having outbursts because my mood was low and I kept getting frustrated
-I can maintain a romantic relationship with my partner like it's a natural thing (like my relationship with my family)
-I like being touched, doesn't matter what mood I'm in. When I used to have outbursts being touched (like cuddled) actually helped calm me down because I felt like I was understood.


I am working on getting better at a lot of that stuff. I have extreme difficulties displaying my emotions properly. I have a summer job where I dont have to talk.
I feel like Im missing out on a lot. My brother is level 1 and he is similar to what you mentioned.


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kraftiekortie
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07 Jan 2019, 9:13 pm

What are you doing as your job?

Congratulations, by the way!



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07 Jan 2019, 10:58 pm

I can break it down in a cynical way. I would gladly trade being level 2 for level 1. Whereas I seriously doubt any level 1 person would want to trade places with me.



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08 Jan 2019, 5:59 am

Here's what confuses me about this post:

You seem fairly articulate and you know how to type and post on an Internet forum. Yet, you say you need "help" brushing your teeth.

Typing and posting is slightly more complicated that brushing teeth, how are you able to do one with no problem but not the other? Unless you're saying you need to be reminded to brush your teeth.



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08 Jan 2019, 6:00 am

EzraS wrote:
I can break it down in a cynical way. I would gladly trade being level 2 for level 1. Whereas I seriously doubt any level 1 person would want to trade places with me.


What's it like being Level 2? What does Level 2 even mean?

And are these "negative numbers"? Level 2 is actually lower than Level 1, etc.?



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08 Jan 2019, 8:40 am

ezbzbfcg2 wrote:
Here's what confuses me about this post:

You seem fairly articulate and you know how to type and post on an Internet forum. Yet, you say you need "help" brushing your teeth.

Typing and posting is slightly more complicated that brushing teeth, how are you able to do one with no problem but not the other? Unless you're saying you need to be reminded to brush your teeth.


Not adressed to me but I am in the same boat.
I know it doesn't seem to make much sense. That part of the brain doesn't seem to be affected the way other parts are. Although it takes me a while to make a post. I type slowly and often pause for a while. Also my phone and laptop fill out words for me so I don't have to type out all the letters. So in that way I also get help.

If you're not familiar with Carly Fleischmann you should look her up. She has become a very public figure who is very articulate and yet has severe autism. She's an author and the first nonverbal talk show host. This is one of her first depictions of her autism.



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08 Jan 2019, 9:11 am

ezbzbfcg2 wrote:
EzraS wrote:
I can break it down in a cynical way. I would gladly trade being level 2 for level 1. Whereas I seriously doubt any level 1 person would want to trade places with me.


What's it like being Level 2? What does Level 2 even mean?

And are these "negative numbers"? Level 2 is actually lower than Level 1, etc.?


The higher the number the higher the level of severity. I started out as a 3. But by around age 8 started displaying less severity so I was reclassified as level 2 moderate.

Being a level 2 for me means that I need a lot of support for everyday things. Think of something you can't do that others can do. Like juggling or playing a piano or advanced mathematics etc. Whatever you can't master. What's impossible or very difficult for you, is very easy for others. There are many things I just can't get a handle on. The connection just isn't there. Most of the level 2's I have come across here and irl seem to have similar difficulties and needs. Some can do stuff I can not and vice versa. But still overall seem basically the same.

I need help getting dressed, shaving (which is why I have a beard). Preparing meals. Remembering to do things outside of my routine. Learning new things. Doing anything different. Going places. Socially I am withdrawn and aloof. When someone is talking to me I don't look at them, I look at stuff around me. I am a flight risk meaning I will wander off and get lost. So there has to always be someone in the house and someone with me wherever I go. I have sensory shutdowns and meltdowns. I am not even self-aware of some of this stuff. I know about it from others describing my behavior.



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08 Jan 2019, 9:23 am

Lol...I can’t do advanced mathematics, nor play the piano, nor juggle....



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08 Jan 2019, 9:30 am

kraftiekortie wrote:
Lol...I can’t do advanced mathematics, nor play the piano, nor juggle....


Right and maybe never no matter how hard and long you try. For those of us with significant autism that can be applied to something as simple as brushing teeth. I need help with that because I do it so clumsy and hard I damage my mouth. Also it's not something I would ever remember to do on my own.