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What makes you level 2 instead of level 1 autism?

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magz
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22 Dec 2017, 6:18 am

blooiejagwa wrote:
EzraS wrote:
blooiejagwa wrote:
kraftiekortie wrote:
There's a person here, named Ezra, who was completely nonverbal and non toilet-trained at age 5. But....at about age 8, things blossomed for him (probably through his intensive therapy).

He's 17 now. He's almost nonverbal as far as speech is concerned----but he certainly writes well. He went from Level 3 to Level 2.

I, myself, didn't speak until I was 5 1/2 years old.


Wow really? That’s awesome.
Also I saw your edited post with added tips - i will look into it! Thanks a lot!


My parents have had to go through a lot of stuff with lawyers and fighting insurance companies and all that. They got pretty lucky I guess when it came to doctors and therapists. They also got advice from occupational therapists and read books and stuff to deal with me more effectively.

I had delayed walking also and even after I started walking I still needed to be in a stroller a lot for any kind of long term walking like at a mall because I would fall down too much etc. I was wearing diapers into my teens just in case. Even being toilet trained it's easy to have wetting accidents when level 2/3 autistic.

I didn't quite blossom at 8, but started functioning a little better. It started with acknowledging people and saying the odd one syllable word here and there. And stuff like that gradually improved over the course of a couple of years where I started testing more as level 2 moderate/severe overall.


Thank you for sharing! This gives me hope!! My son also ADORES books though he cannot read he just loves them - I am thinking maybe Reading/Writing can be HIS savant thing too! Thanks and stay rad!

Does he love books?
Maybe you should look at EikonaBridge's ideas of teaching autistic children written English as their first language. I often disagree with him about the philosophy of science but I think he is perfectly right that if a child can't learn to speak, they still may learn other ways of communication. His own kids did.
I think the fingerpainting was a great idea, does he still do it?
Do you draw for him? He may be visual thinker, I guess it is quite common among the nonverbals.
Strapping him was clear abuse!

I'm sorry if you read superiority in my posts, I didn't mean it and don't feel it. TBH, I would be a now stuck somewhere in a mental hospital if it wasn't for some two specialists who could see more than outside symptoms. Because out of the blue I fell from level 0 (doing well without any support) into something more close to what you describe as level 2 when I hit the limits of my coping abilities – and as I had no diagnose of autism, I got the "mentally ill" label and drugs that made it worse :(


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22 Dec 2017, 7:47 am

SaveFerris wrote:
EzraS wrote:
SaveFerris wrote:
kraftiekortie wrote:
but he certainly writes well. He went from Level 3 to Level 2.



He certainly does , he writes better than me and I'm level 1 ( I think ) and have 29 years more experience


It's my "savant" thingy. It comes from reading a lot. I'm usually "channeling" whatever author I'm reading, so I wouldn't be surprised if my style of writing changes. But I type slow as hell and rely heavily on spell check.


These are not negatives on a forum so it's Saul Goodman


I'm surprised I got that. It took a while for the penny to drop :lol:



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22 Dec 2017, 12:08 pm

EzraS wrote:
SaveFerris wrote:
EzraS wrote:
SaveFerris wrote:
kraftiekortie wrote:
but he certainly writes well. He went from Level 3 to Level 2.



He certainly does , he writes better than me and I'm level 1 ( I think ) and have 29 years more experience


It's my "savant" thingy. It comes from reading a lot. I'm usually "channeling" whatever author I'm reading, so I wouldn't be surprised if my style of writing changes. But I type slow as hell and rely heavily on spell check.


These are not negatives on a forum so it's Saul Goodman


I'm surprised I got that. It took a while for the penny to drop :lol:


I thought about explaining it but that just ruins it , besides I'd thought you'd get it anyway :)


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09 Jan 2018, 5:42 pm

I'm level 2, completely dependent on my parents, can't have a real conversation, withdrawn and aloof for starters. I mostly communicate through AAC or texting my parents or caregiver. I will never work, I can't drive, I stim a lot, there's more but that should give you an idea.



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10 Nov 2019, 6:16 pm

Amaltheia wrote:
There's also an implicit Level 0 — Requiring No Support
Translation: Ah, they're functional enough. Just throw them out there and let them fend for themselves. And blame anything that happens on their not fitting in. If they just tried harder, they'd be fine


I see you're plenty old enough to have gotten this kind of 'support' as a level 1 child. Sure sounds like my childhood. Not that I was even diagnosed with anything, AFAIK.

I would be interested in learning what level 2s think of the support they got as a child in the 60s and 70s. And were any level 1s placed in special ed with level 2s?


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10 Nov 2019, 10:36 pm

I consider myself level 2 (diagnosed before there were "levels"), or moderate, because there is a clear difference between me and a lot of high-functioning people. I can't drive or hold a job. I can't even initiate a conversation myself, my selective mutism kicks in until someone else talks to me, and even then speaking is often a challenge. I often partially or completely shut down when in a public place, have trouble identifying when I need to go to the bathroom until it's an emergency, and if left to my own devices, usually will not eat (though I do if food is put in front of me). I'd like to live on my own at some point, but I don't know if that's ever going to be possible.


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11 Nov 2019, 2:56 am

dragonsanddemons wrote:
I consider myself level 2 (diagnosed before there were "levels"), or moderate, because there is a clear difference between me and a lot of high-functioning people. I can't drive or hold a job. I can't even initiate a conversation myself, my selective mutism kicks in until someone else talks to me, and even then speaking is often a challenge. I often partially or completely shut down when in a public place, have trouble identifying when I need to go to the bathroom until it's an emergency, and if left to my own devices, usually will not eat (though I do if food is put in front of me). I'd like to live on my own at some point, but I don't know if that's ever going to be possible.


That sounds level 2 alright.



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26 Nov 2019, 11:13 am

EzraS wrote:
dragonsanddemons wrote:
I consider myself level 2 (diagnosed before there were "levels"), or moderate, because there is a clear difference between me and a lot of high-functioning people. I can't drive or hold a job. I can't even initiate a conversation myself, my selective mutism kicks in until someone else talks to me, and even then speaking is often a challenge. I often partially or completely shut down when in a public place, have trouble identifying when I need to go to the bathroom until it's an emergency, and if left to my own devices, usually will not eat (though I do if food is put in front of me). I'd like to live on my own at some point, but I don't know if that's ever going to be possible.


That sounds level 2 alright.


this was me until age 21 exactly. i had to be screamed at by my parents and treated badly by them to train me to improve at initiating conversation which still i could not do beyond the parroted phrases and scenarios they trained me for.

my parents were morons to get me married but it pushed me into the 'deep end' and my brain had matured enough to where with my ex's help i was able to self-regulate these issues slightly better, and experiences andreading a lot and watching youtube videos and reading fiction
having kids also pushed it to the extreme.

even if you have these issues i think you may improve at them enough to where you can get by better every year until people are unobservant enough (because you dont seem odd to them) to think you don't have ASD.

just never let the struggles be ignored and talk about it the way you wrote them here whenever , like know,
know that u can and should ask ppl for help or explain


i did the wrong thing because i couldnt even realize how to put them in words in my own mind, or understand all the problems,i things just happened, i only saw a portion of it (until retrospectively i know)
and i didnt and couldnt ask for help for ANYTHING which i never did for anything until i was 21 .
my sister wd help me the most because she is a genius and knows what people need


then my Ex H trained me to ask him and explained and stuff. and he was really good about that he was like a built-in therapist for that. and my sister too,. thank God for that stuff he did even though he was mean too later

so don't do what i did, your problems are enough to where it is really really important to have someone helping and hopefully your brain does what mine did and gets by better. if not, still never be too ashamed or shy to ask. and pay attention to yourself check in with yourself constantly,

another thing i learned to do from my trherapist.


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26 Nov 2019, 11:19 am

sorry if the above was patronizing or condescending or too imposing...or doesnt apply to you as your case is more than what i was saying...


if it applies take it as something, otherwise just ignore it as someone rambling (dont take it personally)


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26 Nov 2019, 11:32 am

Balbituate wrote:
I got labeled/diagnosed a long time ago.  So I didn't get any level.  It wasn't even an official diagnosis.  People just thought it was a convenient label since no one knew what was up with me. I see a lot of people here who are level 2 instead of level 1.  What Makes You Level 2 Instead Of Level 1 Autism?
Uhh ... hmm ... I don't know ... maybe ... 3,000 experience points?

:wink: That's a D&D joke, in case you were wondering...


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26 Nov 2019, 11:42 am

Noca wrote:
I have tried roughly a dozen or so different jobs and couldnt maintain employment. It would take the absolute best case scenario for me to live independently without supports, not just disability income(I live with my parents at 31 and have been on disability since 2007). I can drive and grocery shop(though unlikely reliably enough to live on my own), maintain a conversation some of the time and struggle socially at other times, I may appear to be higher functioning than I am. I was labeled level 2 after going through the most extensive autism assessment available.

I have a number of chronic illnesses which also impact my ability to function and the supports that I require. I am neither high nor low functioning.



i'm glad you got that label so you could get the disability thing. im interested that u drive and shop as that means you are exposed to so much stress which comes with that.

do u have that thing where if there is an Ad or a salesperson tried to sell you something u would just buy it because they seemed to want you to or it seemed like the only thing to do with no other choice?

i feel like that is a risk when grocery shopping or any kind of shopping with autism. i am thinking if i had someone else just manage my finances and give me a select amount of money for specific things per week, i would do better with it.

my EXh did that because he saw how i am.


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26 Nov 2019, 2:53 pm

blooiejagwa wrote:
EzraS wrote:
dragonsanddemons wrote:
I consider myself level 2 (diagnosed before there were "levels"), or moderate, because there is a clear difference between me and a lot of high-functioning people. I can't drive or hold a job. I can't even initiate a conversation myself, my selective mutism kicks in until someone else talks to me, and even then speaking is often a challenge. I often partially or completely shut down when in a public place, have trouble identifying when I need to go to the bathroom until it's an emergency, and if left to my own devices, usually will not eat (though I do if food is put in front of me). I'd like to live on my own at some point, but I don't know if that's ever going to be possible.


That sounds level 2 alright.


this was me until age 21 exactly. i had to be screamed at by my parents and treated badly by them to train me to improve at initiating conversation which still i could not do beyond the parroted phrases and scenarios they trained me for.

my parents were morons to get me married but it pushed me into the 'deep end' and my brain had matured enough to where with my ex's help i was able to self-regulate these issues slightly better, and experiences andreading a lot and watching youtube videos and reading fiction
having kids also pushed it to the extreme.

even if you have these issues i think you may improve at them enough to where you can get by better every year until people are unobservant enough (because you dont seem odd to them) to think you don't have ASD.

just never let the struggles be ignored and talk about it the way you wrote them here whenever , like know,
know that u can and should ask ppl for help or explain


i did the wrong thing because i couldnt even realize how to put them in words in my own mind, or understand all the problems,i things just happened, i only saw a portion of it (until retrospectively i know)
and i didnt and couldnt ask for help for ANYTHING which i never did for anything until i was 21 .
my sister wd help me the most because she is a genius and knows what people need


then my Ex H trained me to ask him and explained and stuff. and he was really good about that he was like a built-in therapist for that. and my sister too,. thank God for that stuff he did even though he was mean too later

so don't do what i did, your problems are enough to where it is really really important to have someone helping and hopefully your brain does what mine did and gets by better. if not, still never be too ashamed or shy to ask. and pay attention to yourself check in with yourself constantly,

another thing i learned to do from my trherapist.


I too have been bad at asking for help or using what help is offered to me. I have a very strong desire to do things on my own, I tend to feel weak or lazy if I need help (I grew up being told I just wasn't trying hard enough, and that mindset became ingrained in me). Plus sometimes shyness/selective mutism gets in the way of asking for help. But I am trying to improve, because I also have a strong desire to be independent. I'm trying to learn skills that I'll need to live on my own. I'm waiting to hear back from a program where I would be living in my own apartment but would still get assistance, and if I don't hear anything by January, I'm looking at possibly just jumping into the deep end and getting an apartment myself, close to my parents so they can still help me out a bit. Otherwise it seems like I can barely even get my toes wet before someone or something pulls me back.


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27 Nov 2019, 11:09 pm

I too see a lot of differences between myself and level 1 autistics. I'm on disability because despite my above average intelligence and college degree, I cannot hold full time work, and have a part time job watching dogs at a doggy daycare; that is about the limit of complexity that I can manage in my work. I also have a hard time remembering to eat or when and how things need cleaning. I'm pretty naive about how to complete basic tasks that haven't been demonstrated to me (case in point, I was trying to dig my car out of a foot of snow this morning with nothing but an ice scraper, and one of my neighbours ended up offering to help me because I was clearly making no progress).

My meltdowns and behavioural reactions can be bad; I've bitten and kicked out at people during them, and have been to the ER three times for self-induced concussions.

I can drive and I'm living on my own right now, but my mom has repeatedly said she doesn't think I should because my place is always a mess and I never have food in my cupboards. I stick to very rigid routines because I don't know how to function outside of them. Talking is difficult for me too; I go nonverbal periodically and even when I can talk, it takes me a long time to form my sentences because there are long pauses between words while I try to find what I want to say. Listening to myself talk on video is incredibly annoying because it's then that I realize how long it takes me to say anything.

That's what separates me from the level 1 autistics I know who are holding down full-time jobs or going to graduate school or dating, etc. and don't seem to have the same struggles I do with daily living skills, talking or behavioural regulation.


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27 Nov 2019, 11:34 pm

my parents actually hired a lady to 'babysit' me .

they didn't put it like that, they said it was for the kids, but then when the kids don't even need her since they arent home all day... they say... we want her to keep staying and keep doing things to help.

my dad actually shouted at me when i said i don't want them to waste money on her...

'She's an important woman to have in your life. She is a very good woman. We need her. She can help you with things. She can talk to you."

i guess they were trying not to hurt y feelings. all the stuff you mention like stocking cupboards, basic tasks, forgetting things....she helps with those.

she's really paralleled with my life in some ways, too many coincidences and similarities that are way too similar (same rare genetic diseases for our kids, same issues with XHs and MOTHER in laws being the source of it) that we didnt know of prior. she is way more educated intelligent and heroic though. i could write a book about her with her as the heroine.

it hurts my feelings to ask for help, also oftentimes i feel incapable of vocalizing it, my conversation can come in pre-set patterns, pre-thought or mulled over/
so i usually pretend im doing fine, then in the end it all collapses and people have to help even more than they would have if i had just let them. so maybe if u can find a way to, or are offered help, dont refuse it. i dont want that to happen to you.

The part u said listening to myself on video is annoying, i can relate to too as i make youtube videos, and have to practice and redo them many times, with notes and all, trying to get past that slowness and stumbling over words and thinking pauses.

my mom would always be yelling at me thinking i was just 'givingup' on tasks and pretending to struggle, basic things like folding a sheet, etc., when i wasn't . she apologized for it now though.

diagnosis is so useful for getting that understanding. i'm glad u are able to be on disability.


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28 Nov 2019, 11:24 pm

StarTrekker wrote:
I too see a lot of differences between myself and level 1 autistics. I'm on disability because despite my above average intelligence and college degree, I cannot hold full time work, and have a part time job watching dogs at a doggy daycare; that is about the limit of complexity that I can manage in my work. I also have a hard time remembering to eat or when and how things need cleaning. I'm pretty naive about how to complete basic tasks that haven't been demonstrated to me (case in point, I was trying to dig my car out of a foot of snow this morning with nothing but an ice scraper, and one of my neighbours ended up offering to help me because I was clearly making no progress).

My meltdowns and behavioural reactions can be bad; I've bitten and kicked out at people during them, and have been to the ER three times for self-induced concussions.

I can drive and I'm living on my own right now, but my mom has repeatedly said she doesn't think I should because my place is always a mess and I never have food in my cupboards. I stick to very rigid routines because I don't know how to function outside of them. Talking is difficult for me too; I go nonverbal periodically and even when I can talk, it takes me a long time to form my sentences because there are long pauses between words while I try to find what I want to say. Listening to myself talk on video is incredibly annoying because it's then that I realize how long it takes me to say anything.

That's what separates me from the level 1 autistics I know who are holding down full-time jobs or going to graduate school or dating, etc. and don't seem to have the same struggles I do with daily living skills, talking or behavioural regulation.
send some of that snow my way!


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28 Nov 2019, 11:30 pm

blooiejagwa wrote:
my parents actually hired a lady to 'babysit' me .

they didn't put it like that, they said it was for the kids, but then when the kids don't even need her since they arent home all day... they say... we want her to keep staying and keep doing things to help.

my dad actually shouted at me when i said i don't want them to waste money on her...

'She's an important woman to have in your life. She is a very good woman. We need her. She can help you with things. She can talk to you."

i guess they were trying not to hurt y feelings. all the stuff you mention like stocking cupboards, basic tasks, forgetting things....she helps with those.

she's really paralleled with my life in some ways, too many coincidences and similarities that are way too similar (same rare genetic diseases for our kids, same issues with XHs and MOTHER in laws being the source of it) that we didnt know of prior. she is way more educated intelligent and heroic though. i could write a book about her with her as the heroine.

it hurts my feelings to ask for help, also oftentimes i feel incapable of vocalizing it, my conversation can come in pre-set patterns, pre-thought or mulled over/
so i usually pretend im doing fine, then in the end it all collapses and people have to help even more than they would have if i had just let them. so maybe if u can find a way to, or are offered help, dont refuse it. i dont want that to happen to you.

The part u said listening to myself on video is annoying, i can relate to too as i make youtube videos, and have to practice and redo them many times, with notes and all, trying to get past that slowness and stumbling over words and thinking pauses.

my mom would always be yelling at me thinking i was just 'givingup' on tasks and pretending to struggle, basic things like folding a sheet, etc., when i wasn't . she apologized for it now though.

diagnosis is so useful for getting that understanding. i'm glad u are able to be on disability.
If you can tolerate the physical presence of someone helping you in your home, I can't, that is why I say that, don't refuse the help. You need to be able to have the ability to rest and recover from sensory and other sorts of overloads and stimuli. If this person is able to do things for you, even things that you can do yourself, so that you can rest, that will help you to be able to have much more quality time with your children. Your children don't need you to do physical things like putting things in cupboards, they need you. And if you can have rest and recovery while they are at school, you will be able to be there for them with much more quality.


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