What makes you level 2 instead of level 1 autism?

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blooiejagwa
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29 Nov 2019, 10:43 am

skibum wrote:
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.


What? I can't (tolerate that is)-- the majority of the time I leave the house and sit in my car in the driveway or go to library (v rare) or go in the basement and sit on a pile of clean laundry (the most often) . online then or reading book or doing work like laundry. tasks i do like wash dishes bring up laundry fold etc but as i told her, i need her to tell me step by step each time (which she does)

i spend some time with her to talk ,esp about her son's issues, which i am very interested in. i also showed her my diagnosis report so she doesn't take offence or think im trying to annoy her or idk what. i also care about her as a person esp as her XH and his mom are basically millionaires who dont help at all and didnt even give her sons their rights in the will, inheritance etc. she came to help me with taking my kid to camp, as an example, so we took turns, along with the nurse and (occasionally, on thursdays) therapist.

she comes between 2-4 days a week, this week she only came 2 days, and very briefly each time, just to help basic stuff and be there while i go pick up younger. she comes for short periods of time now anyway at my request though her fee is the same


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CarlM
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10 Dec 2019, 10:53 pm

Kiriae wrote:
The people above already said what it means for ASD spectrum but I would like to say that in Poland all disabilities are level 1, 2 or 3 and those are:

1. Slight disability/ Partial inability to work
Disability that significantly reduces the ability to perform work, compared to the ability of a healthy person with similar professional qualifications or causes limitations in performing social roles, that can be compensated by the use of equipment or technology.


Unless of course you work in a STEM field, then being level 1 is par for the course :lol:.


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firemonkey
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11 Dec 2019, 2:43 am

Kiriae wrote:
The people above already said what it means for ASD spectrum but I would like to say that in Poland all disabilities are level 1, 2 or 3 and those are:

1. Slight disability/ Partial inability to work
Disability that significantly reduces the ability to perform work, compared to the ability of a healthy person with similar professional qualifications or causes limitations in performing social roles, that can be compensated by the use of equipment or technology.
2. Moderate disability / Full inability to work
Disability that makes a person incapable of work or able to work only in protected work conditions or requiring temporary or partial assistance to other people in order to fulfill social roles.
3. Significant disability / Full inability to work and inability to independent existence
Disability that makes you unable to work or able to work only in protected work conditions and requiring, in order to fulfill social roles, permanent or long-term care and help of other people in connection with inability to independent existence.

I received level 1 when I was attending school because I was dealing with life just fine (I only needed headphones to prevent sensory overload and the teachers writing stuff down so I know what the homework is) but after graduating and being unable to deal with the changes related to becoming an adult and job hunting I earned level 2.



I'd fit level 2 in a system based on that .



skibum
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11 Dec 2019, 11:45 am

To BLooiejagwa
Captcha is refusing to let me quote anyone.
Oh goodness. I totally understand and relate to you hiding away. That is really tough. I wish there was a way that you could feel comfortable with her since she does do very helpful things. The only person I feel comfortable letting stay in my house for awhile is my brother, anyone else, I really really struggle with.


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nca14
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15 Dec 2019, 3:36 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.

If I have ASD, it is rather level 2 than 1. I received disability level 2, which may be also due to other mental disorders than autism (especially OCD, which might be named as really serious). I functioned quite well to about 23rd year of life, when I was on studies (or earlier in school). Scholastic skills were my very large asset.

I am very poor in occupational area. I had very, very simple job (easier than cleaning and probably also guarding) thanks to my ruling of disability for about 7 months (firstly for about 5-6 weeks, later for about 5,5 months).

I do not live on my own (I live with parents and do not engage in household activities at all - maybe rather due to OCD about possibility of infection). I can't make a laundry or soup. I have never driven a car (of course I have no driving licence). I take a shower very rarely. I have never had a girlfriend (and any close friend also).



firemonkey
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15 Dec 2019, 4:54 pm

There's a big difference as to how I was in Essex compared to how I've been since living in Wiltshire . In Essex I was basically self neglecting , but didn't realise it at the time .
Being someone with chronic mental health problems, and no one at hand to advocate for me, as is typical in the UK , I was at the back of the queue for help and support .
There was no one coming round to my flat to see how I was doing .


Here ,in Wiltshire, I've had my stepdaughter advocating for me, putting in place help to keep my flat clean , and more besides.
My care plan says the care/help is to allow me to continue living independently in my flat .

Although I'm doing better in no way could I be seen to be doing as well as the average person my age . I've never worked. I don't drive. I have no friends . I'm limited when it comes to getting to places on my own due to my poor navigational ability . I have no aptitude for practical tasks , apart from being reasonably OK at money management . My stepdaughter deals with the rest of the practical stuff that crops up .



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17 Dec 2019, 1:07 am

A year and a half after my diagnosis, I had an interview to determine the amount of support I needed. I used my Supports Intensity Scale interview results to determine my autism level. The interview measured the type of support needed (monitoring, verbal direction, physical assistance), how frequently (monthly, weekly, daily), and how much time needed each day (30 min to 2 hours, 2 to 4 hours, more than 4 hours) for 57 different activities in 7 categories. I required no support in some activities and more support in others, but I required level 2 support on average in all categories.

Home activities:
I need physical assistance with cooking, cleaning, laundry every day. I need verbal directions with personal hygiene, dressing every day.

Community activities:
I need physical assistance with transportation, navigating public settings, social interaction, accessing services every week. I need verbal directions with shopping every week.

Learning activities:
I need level 3 physical support with self-determination, self-management, problem solving, functional academic skills every day. I need physical assistance with learning health and physical skills.

Employment activities:
I need level 3 physical support with working quickly, co-worker/supervisor interaction every week. I need physical assistance with task-switching, learning job skills.

Health and Safety activities:
I need level 3 physical support with maintaining emotional well-being every day. I need physical assistance with ambulating, avoiding hazards every day. I need physical assistance with obtaining healthcare services every week. I need monitoring with maintaining a nutritious diet every day.

Social activities:
I need physical assistance with communication every day. I need physical assistance with appropriate social skills, socializing with strangers, friendships, dating every week.

Protection and Advocacy scale:
I need level 3 physical support with protection from exploitation. I need physical assistance with obtaining legal services, managing personal finances, self-advocating. I need verbal directions with making choices, decisions every day.


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29 Mar 2020, 3:54 pm

I was level 1 at first and my wife gave me the support did most everything by myself.I did not find out that was autistic till way late in life late 70's now in 80's may be between level 1& 2.



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29 Mar 2020, 7:39 pm

EzraS wrote:
I think there is a distinct difference between level 1 and 2. Completely different lifestyles. As a level 2 it is unlikely that I will ever lead a normal life as in have my own place, get up get dressed, go to work, get groceries, pay bills etc. I'll always be like a dependent little kid.
The trade off so to speak is I won't have to deal with many of the difficulties a level 1 person does.


Yes it’s different not better/worse.



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30 Mar 2020, 9:19 am

Thanks.



AriaEclipse
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04 Apr 2020, 2:41 pm

I was diagnosed at 3 but I don't think anybody ever specified a "level" for me. I've read all the paperwork from various evaluations (the last was when I was 16, so 10 years ago) and nothing is said about what level I am at all. I don't get any real supports aside from a couple accommodations in school and I was granted an exception to stay on my mother's health insurance from her job after I turned 26 in January when I typically would have been taken off of her plan. I plan on getting a job after I graduate but hopefully something where I get to work from home. I live with my mom currently too because I don't make enough money to move out yet but I can drive (though I don't like it and it makes me anxious). I've always felt a bit younger than my biological age, like I feel like I'm maybe 20 or 21 mentally so I don't know where that leaves me. My ultimate life goal is to be able to live as independently as possible as soon as I can.


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04 Apr 2020, 4:27 pm

TheSpectrum wrote:
I guess I'm classed as the borderline between, 0 and 1 but at one time in my life I was between 1 and 2


Undiagnosed, but me too. I come from a family of nine kids and I know that helped me adjust when I was younger. I've never needed anything except alone time. Things fell apart for me as a teenager, then got back on track in my early 20s when I met my ex-husband. Things are off the rails a bit now again - I think I'm kinda ok but people's impressions of me to do with my isolation - they can no longer laugh it off or make excuses for it. I have to deal with other's worry and that will only get worse as time goes by. I don't like everyone trying to fix me, and I'm wobbling on masking more (like I used to) vs not masking. I always made up stories to appear to have more of a typical life than I do. And learning about autism recently has opened my eyes and has been a bright point in my life. Why can't I just live the way I want to? I'm not hurting anyone and I'm def not a shut in.



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04 Apr 2020, 4:37 pm

My assessment scores made me Level 2. I'm not sure how else to answer the question; my level was based on clinical data from 12 hours of testing.

I can't distinguish one specific area of concern.

All of my results were in the "significant clinical risk" or "very significant clinical risk" range.


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CarlM
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04 Apr 2020, 8:05 pm

AriaEclipse wrote:
I was diagnosed at 3 but I don't think anybody ever specified a "level" for me. I've read all the paperwork from various evaluations (the last was when I was 16, so 10 years ago) and nothing is said about what level I am at all.

The "level of support required" is new in DSM-5 (2013). Here is the DSM-5 criteria: Autism Diagnosis Criteria: DSM-5


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AriaEclipse
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05 Apr 2020, 1:19 pm

CarlM wrote:
AriaEclipse wrote:
I was diagnosed at 3 but I don't think anybody ever specified a "level" for me. I've read all the paperwork from various evaluations (the last was when I was 16, so 10 years ago) and nothing is said about what level I am at all.

The "level of support required" is new in DSM-5 (2013). Here is the DSM-5 criteria: Autism Diagnosis Criteria: DSM-5


I see, that makes a lot of sense as it was the late 1990's when I was diagnosed and the last evaluation was in 2010. I don't really want to have another evaluation ever so I'd say I'm level 1 most likely then but not officially.


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05 Apr 2020, 4:33 pm

I don't think I have a " level " DX I was DXd when Asperger's was still a separate DX.


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