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firemonkey
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11 Jun 2019, 2:59 am

I don't think he's being mean as much as he sees Isabella's history as being very left field compared to the vast majority who are level 2 .

It certainly raises questions as to how levels should be assigned,how functioning should be evaluated.



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11 Jun 2019, 4:23 am

IsabellaLinton wrote:
I was assessed last year as being in the range of Level 2, with no learning disability. I earned two degrees without accommodations, I've lived independently since I went to Uni at age 18, I worked in a demanding career for many years, and I've owned my own homes. I don't let the number bother me, because I know it doesn't define me. In my case, my restricted and repetitive behaviours were off the charts, and my social interaction is very weak (I also have agoraphobia, selective mutism and Complex Trauma). In theory I require "signficant support" or something like that, but I've managed my entire life with no support and it seems there's no support available anyway, beyond OT and therapy.

Don't let a number worry you.



Well done Isabel!!


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11 Jun 2019, 10:13 am

Isabella,

I also was primarily academic, not social, and suffered some health difficulties and anxiety during my university career, but nowhere near as serious as what you experienced. You are an interesting person and, like me, a reader and a cat lover. Your posts on the topic of "autistic burnout" are very informative.



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11 Jun 2019, 12:37 pm

IstominFan wrote:
Isabella,

I also was primarily academic, not social, and suffered some health difficulties and anxiety during my university career, but nowhere near as serious as what you experienced. You are an interesting person and, like me, a reader and a cat lover. Your posts on the topic of "autistic burnout" are very informative.


Thanks so much, Istomin.

I share that information not to humble brag, but to point out how misleading levels can be, and how destructive it can be to mask. I hated those years and they didn't feel like any type of accomplishment, but I followed the crowd along what I perceived to be a normal life tangent. Then it all fell apart, because I couldn't sustain the effort or executive function.

I like to warn people how dangerous masking can be (with or without a diagnosis), and to remind people that testing levels don't always depict what we're capable of doing under duress or out of necessity.

I wanted the OP to see that Level 2 does not (necessarily) mean a person is incapacitated, or that they should feel ashamed.


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firemonkey
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11 Jun 2019, 1:19 pm

The more I read about levels the more, at levels 1 and 2 , it comes across as based on severity of ASD symptoms rather than how well a person functions .

For example as someone with Asperger's I'd fit into level 1 , but added to that is schizophrenia,probable dyspraxia and probable learning difficulty. All of those three having a negative impact on functioning.

I'd argue that if categorising based on functioning co-morbids should be factored in to give a more realistic assessment
of how well a person functions .



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11 Jun 2019, 1:22 pm

firemonkey wrote:
The more I read about levels the more, at levels 1 and 2 , it comes across as based on severity of ASD symptoms rather than how well a person functions .


I agree. My compulsive stimming is out of control. I take meds to control some of my stims because they cause self-harm. That was a big part of the "Restricted and Repetitive Behaviour" category. They couldn't overlook something so significant or clinically obvious.


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firemonkey
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11 Jun 2019, 1:29 pm

It suggests to me there should be separate levels for severity of ASD and for how well a person functions .



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11 Jun 2019, 1:31 pm

firemonkey wrote:
The more I read about levels the more, at levels 1 and 2 , it comes across as based on severity of ASD symptoms rather than how well a person functions .

For example as someone with Asperger's I'd fit into level 1 , but added to that is schizophrenia,probable dyspraxia and probable learning difficulty. All of those three having a negative impact on functioning.

I'd argue that if categorising based on functioning co-morbids should be factored in to give a more realistic assessment
of how well a person functions .


I preferred the DSM IV in some ways because it had a component that reflected how a person functioned overall with everything taken into account.

A person could have very mild autism but severe depression which would make that person incapable of working.

It’s important to keep in mind that the autism levels are only talking about autism and don’t necessarily reflect how a person functions overall.


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11 Jun 2019, 1:51 pm

If the DSM 5 is followed severity is based on needed levels of support. That by definition is based on literal ability to function is society. IQ and severity of traits effect ability to function in society but it is an indirect relationship, it is not the same thing.

The problem began with functioning levels being defined by IQ and people using the terms “high functioning” and “low functioning” despite those terms having never been in any diagnostic manual. This is still a problem today as since Aspergers was eliminated diagnosis of “high functioning autism” instead of Aspergers is often being given out. For the life of me I can not understand why eliminate Aspergers because it is not in the current manual only to replace it with a diagnosis that has never been in any manual. :(


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firemonkey
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11 Jun 2019, 2:10 pm

Functioning levels being defined by IQ is a poor way of doing things IMO . It's possible to be very intelligent in some ways and yet struggle intelligence wise in other ways(learning difficulty) .

I can come across as very intelligent when it comes to talking with people . However when it comes to dealing with something practical I don't do well . As one of my granddaughters said about me- I have no common sense.



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11 Jun 2019, 2:18 pm

Isabella,

I was in a similar situation, although not as serious as what you describe. Still, I can relate to a lot of what you say.



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11 Jun 2019, 6:15 pm

Functioning labels were added as a half-hearted way to introduce the spectrum concept to the DSM. The ICD clearly thinks that functioning labels aren't sensible, here's what they have:

6A02.0 Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language
6A02.1 Autism spectrum disorder with disorder of intellectual development and with mild or no impairment of functional language
6A02.2 Autism spectrum disorder without disorder of intellectual development and with impaired functional language
6A02.3 Autism spectrum disorder with disorder of intellectual development and with impaired functional language
6A02.4 Autism spectrum disorder without disorder of intellectual development and with absence of functional language
6A02.5 Autism spectrum disorder with disorder of intellectual development and with absence of functional language

This isn't perfect though, as whether you consider someone "severe" or "mild" could easily depend on the day that the diagnosis was done, and on what specific skills were measured. To really help someone on the spectrum properly would require a full psycho educational assessment


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firemonkey
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11 Jun 2019, 6:53 pm

^ Can you have good verbal intelligence and yet have an impairment of functional language?



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11 Jun 2019, 6:55 pm

Of course you can.

Ezra is a prime example. He has a good command of the English language----but he experiences great difficulty talking. Talking is "functional language."



IsabellaLinton
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11 Jun 2019, 7:05 pm

firemonkey wrote:
^ Can you have good verbal intelligence and yet have an impairment of functional language?


I have a high IQ and I have a strong command of reading / writing, but I'm not comfortable speaking. I'm physically able to speak, but I have never liked to do so. I also have selective mutism. I attended speech therapy as a child and again in 2015 after my stroke.

I'm not sure if that is the type of information you're seeking from your query.


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firemonkey
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11 Jun 2019, 7:20 pm

^ Is it also about responding in a verbally appropriate way ?