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Questioning "Level"

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plokijuh
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10 Dec 2019, 10:26 pm

I'm really struggling with my varied capacity. I am level two, since my psychologist consulted with a team of autism specialists at a well known clinic and they decided I'm better classed as level two (may 2019). Prior to that i was classified as level 1.

What i'm struggling with is the fact that I don't "look" autistic. I absolutely accept that I fit the criteria in terms of functional capacity and impact. I do need significant support, and the fallout is intense. But I was watching a TV show about adults on the spectrum the other day and with all of them you'd think of autism to look at them. Someone who understands autism is women would know with me, but generally my surface level interpersonal skills would pass for "normal" as long as I didn't have to maintain it for long and I could withdraw completely afterwards.

Does anyone else feel like a weird mix of levels 2-0? I'm finding it difficult because people read my body language etc. as my being a trauma victim, which i'm not.


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AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
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the_real_roxanne
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10 Dec 2019, 10:40 pm

how many levels are there?



firemonkey
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10 Dec 2019, 11:38 pm

It's hard to tell what level a person should or should not belong to based on what's said on these forums . There's people here who cope fairly well , based on what they say, who are level 2 , and people who cope less well,based on what they say, who are level 1 .

Bottom line it's a very inexact process .



plokijuh
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11 Dec 2019, 12:31 am

firemonkey wrote:
It's hard to tell what level a person should or should not belong to based on what's said on these forums . There's people here who cope fairly well , based on what they say, who are level 2 , and people who cope less well,based on what they say, who are level 1 .

Bottom line it's a very inexact process .


I'm verbally articulate but struggling immensely in my life. Again, the impact is extremely lopsided. I'm not coping well at all.

I'm not really asking anyone to say what level i should be. Just wondering if others feel the same.


_________________
Diagnosed ASD

AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
RAADS-R: 165
RDOS: Your neurodiverse (Aspie) score: 159 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)


Last edited by plokijuh on 11 Dec 2019, 12:33 am, edited 1 time in total.

plokijuh
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11 Dec 2019, 12:32 am

the_real_roxanne wrote:
how many levels are there?

There are three.


_________________
Diagnosed ASD

AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
RAADS-R: 165
RDOS: Your neurodiverse (Aspie) score: 159 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)


firemonkey
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11 Dec 2019, 1:05 am

plokijuh wrote:
I'm verbally articulate but struggling immensely in my life. Again, the impact is extremely lopsided. I'm not coping well at all.

I'm not really asking anyone to say what level i should be. Just wondering if others feel the same.



I'm in the same position in that my verbal ability significantly outstrips my practical , daily living skills . I'm lucky , in that I have good support from my stepdaughter. Without it I'd be in the situation I was in in Essex , i.e not doing at all well , but because I'm chronically as opposed to acutely mentally ill, being put on the back burner in terms of help and support.

My situation was very similar to your situation before I moved to Wiltshire , to be near my stepdaughter.



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11 Dec 2019, 3:07 pm

plokijuh wrote:
I'm really struggling with my varied capacity. I am level two, since my psychologist consulted with a team of autism specialists at a well known clinic and they decided I'm better classed as level two (may 2019). Prior to that i was classified as level 1.

What i'm struggling with is the fact that I don't "look" autistic. I absolutely accept that I fit the criteria in terms of functional capacity and impact. I do need significant support, and the fallout is intense. But I was watching a TV show about adults on the spectrum the other day and with all of them you'd think of autism to look at them. Someone who understands autism is women would know with me, but generally my surface level interpersonal skills would pass for "normal" as long as I didn't have to maintain it for long and I could withdraw completely afterwards.

Does anyone else feel like a weird mix of levels 2-0? I'm finding it difficult because people read my body language etc. as my being a trauma victim, which i'm not.
I am very similar to you except that I have had trauma. But people don't read my body language as my being a victim of trauma even though I have been one. But what you said in your first paragraph, I completely relate to. I am very much like you in that regard. I, however, tested as a level 3.


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11 Dec 2019, 3:20 pm

People have trouble interacting with disabled people when there is no obvious sign of disability.

In some sense those with "Down's syndrome" are lucky because it is so obvious to someone who has studied it.

Same with those in a power chair. It is obvious that they need a special parking permit. But there are those who also need parking permits but have no obvious signs of physical disability when walking 40 ft to the bank teller from a parked car.



plokijuh
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13 Dec 2019, 4:26 pm

skibum wrote:
I am very similar to you except that I have had trauma. But people don't read my body language as my being a victim of trauma even though I have been one. But what you said in your first paragraph, I completely relate to. I am very much like you in that regard. I, however, tested as a level 3.

Thank you that's helpful to hear. My psychologist said my body and brain respond as though i've experienced trauma because i'm autistic. Even though no one has hurt me, my body and brain is constantly responding as though there's trauma when it's just normal life.


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Diagnosed ASD

AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
RAADS-R: 165
RDOS: Your neurodiverse (Aspie) score: 159 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)


skibum
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13 Dec 2019, 5:49 pm

plokijuh wrote:
skibum wrote:
I am very similar to you except that I have had trauma. But people don't read my body language as my being a victim of trauma even though I have been one. But what you said in your first paragraph, I completely relate to. I am very much like you in that regard. I, however, tested as a level 3.

Thank you that's helpful to hear. My psychologist said my body and brain respond as though i've experienced trauma because i'm autistic. Even though no one has hurt me, my body and brain is constantly responding as though there's trauma when it's just normal life.
When we are severely Autistic but no one can tell, navigating life itself is traumatic. So you might be experiencing trauma every without realizing it. Your body is not going to react that way unless it is reacting to something traumatic. Trauma comes in many forms, sometimes it is acute like a war zone or a violent crime, other times the sheer effort it takes to navigate daily life when you are not designed to live in a society can be trauma in and of itself. This is the case with me. But I have had both kinds. My trauma therapist says that we cannot treat me for PTSD from trauma because my navigating daily life trauma is ongoing and will never stop unless society changes. So we just have to provide safe spaces for me to be able to have breaks.


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plokijuh
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13 Dec 2019, 8:29 pm

skibum wrote:
When we are severely Autistic but no one can tell, navigating life itself is traumatic. So you might be experiencing trauma every without realizing it. Your body is not going to react that way unless it is reacting to something traumatic. Trauma comes in many forms, sometimes it is acute like a war zone or a violent crime, other times the sheer effort it takes to navigate daily life when you are not designed to live in a society can be trauma in and of itself. This is the case with me. But I have had both kinds. My trauma therapist says that we cannot treat me for PTSD from trauma because my navigating daily life trauma is ongoing and will never stop unless society changes. So we just have to provide safe spaces for me to be able to have breaks.

Thank you for your insights. I think this has been a shock for me to learn to understand. I've always dismissed my own feelings because I knew there wasn't anything traumatic in a (neurotypically) objective sense. I've often been told in my life that I always overreact to everything so it takes time to stop blaming myself. It's not anyone's fault, and I think it's hard coming to terms with that.

I'm sorry you've had to experience extra trauma in addition to just the difficulty of living in a world that's too much for our brains.


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Diagnosed ASD

AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
RAADS-R: 165
RDOS: Your neurodiverse (Aspie) score: 159 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)


SharonB
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14 Dec 2019, 1:05 am

plokijuh wrote:
I've always dismissed my own feelings because I knew there wasn't anything traumatic in a (neurotypically) objective sense. I've often been told in my life that I always overreact to everything so it takes time to stop blaming myself.


THAT!! When my assessor asked at my first appt what trauma I have had, I came up with one and only one example (something that happened to my family). But really I had this long mental list of all these things which I knew were not "trauma", but were to me. Or maybe some would be to others. I can't distinguish when my reaction is "over" or "under". I wrote them down and brought the list to my second appt.

My assessor did not give a level but said "mild to moderate". I do feel like a Level 1-2, and yes 0 when there is no stress. In public I do not seem Autistic; it is nearly a completely internal experience. Obviously people pick up on it b/c I don't get invited to hang out (or am I supposed to invite them?), or there are other misunderstandings (most often when I am tongue tied). Even my assessor said I did not seem to be in distress (I am!! !!) but my tests showed low functioning.



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14 Dec 2019, 7:18 am

Situations - to my fairly simple mind it comes down to that . How I am is very dependent on the situation . The so called 'levels' would vary because of that . I suspect that's true for quite a lot of us .



plokijuh
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16 Dec 2019, 12:13 am

firemonkey wrote:
Situations - to my fairly simple mind it comes down to that . How I am is very dependent on the situation . The so called 'levels' would vary because of that . I suspect that's true for quite a lot of us .

By situation do you mean general life situation (living circumstances, finances, responsibilities etc.) or immediate situation (party vs library)? I think it's mostly the former plus a little of the latter in my life. So I am obv more capable in quiet, predictable environments than parties, but my capacity in both of those immediate situations also depends on my broader life circumstances. Before I had kids I was far better at masking etc.


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Diagnosed ASD

AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
RAADS-R: 165
RDOS: Your neurodiverse (Aspie) score: 159 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)


firemonkey
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16 Dec 2019, 2:14 am

plokijuh wrote:
firemonkey wrote:
Situations - to my fairly simple mind it comes down to that . How I am is very dependent on the situation . The so called 'levels' would vary because of that . I suspect that's true for quite a lot of us .

By situation do you mean general life situation (living circumstances, finances, responsibilities etc.) or immediate situation (party vs library)? I think it's mostly the former plus a little of the latter in my life. So I am obv more capable in quiet, predictable environments than parties, but my capacity in both of those immediate situations also depends on my broader life circumstances. Before I had kids I was far better at masking etc.


Finances- Level 0
Keeping flat clean without help- level 2 to 3 . Practical tasks generally level 2-3

Interacting with stepdaughter and grandaughters level 1
Interacting with other people than them - level 2

Getting around - level 2-3. Poor navigational skills . Stick to small area I know . Longer journeys someone has to be with me

Library would be level 1 . Party level 2 .

Occupationally - Never worked . Assessment over a decade ago - the best that could be expected was light sheltered work in structured, supported setting . Level 2-3 .

Washing -Putting in machine not a problem
Hanging on clothes horse - Struggle to do. Stepdaughter or a granddaughter does it .
Level 1



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16 Dec 2019, 6:11 am

firemonkey wrote:
Level 0... Level 2-3... Level 1...

I appreciate the details.

Even within a category it fluctuates. Finances when I have a spreadsheet (or time for a list): Level 0 (I've got it down to the penny). Finances when it's not "controlled": Level 2 (I neglect them further).