What makes you level 2 instead of level 1 autism?

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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.



IsabellaLinton
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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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blooiejagwa
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06 Apr 2020, 7:01 pm

IsabellaLinton wrote:
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.


I hope they actually gave you resources to help not just a level assigned... Level 2 is not a joke!! Adult ASD with Level 2 deserves support especially if they went most of their lives undiagnosed! :x


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IsabellaLinton
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06 Apr 2020, 8:08 pm

blooiejagwa wrote:
IsabellaLinton wrote:
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.


I hope they actually gave you resources to help not just a level assigned... Level 2 is not a joke!! Adult ASD with Level 2 deserves support especially if they went most of their lives undiagnosed! :x


Recommendations:

Emotional / Psychological / Trauma - 99th percentile for anxiety and depression (8 subcategories)
Overall classification: Very Significant Clinical Risk including CPTSD
~ Continue with trauma therapist
~ Equine therapy
~ Discuss concerns with GP and psychiatrist
~ Referred to ASD psychotherapist for DBT
~ Continue meds for depression, anxiety, nightmares

Reading and Interpreting Social Cues
~ Severe range for social awareness, social cognition, social communication, social motivation
~ Overall social responsiveness in "severe range"
~ Discuss with counsellors (above)

ADOS
~ Well above the cutoff for ASD

Executive Function: Inhibition, Emotional Control, Shifting, Self-Monitoring, Initiation, Memory, Planning and Organising
~"Highly significant difficulties"
~"Will benefit from support"
~"Attempt to build flexibility around non-essential routines to reduce anxiety"

Sensory Processing Disorder and Repetitive Behaviours / BFRB / Self-Harm
~"Much more hypersensitive than most people" (e.g., misophonia, photosensitivity)
~"Much more hyposensitive than most people" (e.g., stimming)
~Referred to OT for SPD and sensory issues
~Prescribed meds for self-harm from BFRB

Alexithymia
~Profound alexithymia
~Work on emotional regulation
~Refer to speech therapy for mutism

Adaptive Behaviour
~Extremely low adaptive skills
~"Far less developed than individuals of the same age"

Functional Daily Living (communication, self-direction, leisure, social skill, self-care)
~Global executive composite of 99th percentile
~"Extremely Low"
~ Agoraphobia
~Interventions as described above

-------

Basically, a lot of fancy words leading to .... not much support of any type.

I met with the ASD psychotherapist for almost a year. I didn't go to the OT or speech therapist because they are too far from home and it would cause me too much anxiety. I did speech therapy a few years ago when I had my stroke but it was more related to functional speech than mutism.

I was recently diagnosed with ADHD and got a lot of practical advice from the neuropsychologist, but now everything is closed because of COVID. I also started ADHD meds.


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zenaspie
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10 Apr 2020, 10:15 am

I’m level 1 but I’ve had a specialist say I may be 2 cause my thought pattern is more complex than other cases he has seen and I also interpret some thing very weirdly.



Joe90
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10 Apr 2020, 1:48 pm

I am definitely level 1. During this lockdown I've had several panic attacks and meltdowns and I am suffering a great deal of depression, but I'm still managing to turn up for work every day, and making eye contact and communicating with other people isn't an issue when in this mindset. In other words, I can still function despite feeling under pressure and being more prone than usual to meltdowns.


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nca14
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11 Apr 2020, 3:31 pm

I do not know if I have ASD at all and I do not know if I am just level 1 if I have ASD. I can make shopping without any help but I have never driven a car (and obviously have no driving licence). I was diagnosed with some other mental disorders than Asperger syndrome (not only with AS). I am very poor in "jobmaking" and in my life I did not feel the need of having close friends other than sexual/romantic partner (but it is rather physical, "animal" drive than "mental need"). I do not have colleagues since above 12,5 years. I have OCD which I may describe as very severe or limiting - even without COVID-19 pandemic I might be described as living with special measures preventing infections. I am very afraid of my future after death. I definitely do not want to experience divine punishment. Shopping is not difficult for me at all. And practically never was. I have disability level 2, not 1. Of course I can dress myself and go to the bathroom without help of other people. But I appear to be challenged in terms of practical usefulness.



firemonkey
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12 Apr 2020, 12:42 am

If Asperger's always = level 1, then just focussing on that would make me level 1.

However throwing probable dyspraxia ,probable learning difficulty and schizoaffective into the mix , and functioning wise that's a lot different from just being ASD level 1.



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13 Apr 2020, 8:52 am

zenaspie wrote:
I’m level 1 but I’ve had a specialist say I may be 2 cause my thought pattern is more complex than other cases he has seen and I also interpret some thing very weirdly.


Weird is a very vague word. Can he explain what he means? I think NTs are usually more illogical and judgemental without basis kn their interpretations than ppl with ASD. They are overall nastier in how thry go about it ..
so is it wrong to be weird as in different from their way of interpretation?


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