How should we measure autism severity?

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Seba7290
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26 Oct 2018, 4:34 am

I think most of the autism community agrees that the functioning labels are highly inaccurate. If you met me on a day where I’m well-rested and my mood is good you would think I’m high functioning, but see me during a meltdown or when I’m really tired and stressed and you would think the opposite.

But the fact of the matter is that some people simply are more impaired by their symptoms than others. I still think it would be useful to classify the overall severity in some way. How would you go about this?



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26 Oct 2018, 5:36 am

Well I consider myself high-functioning in all areas. Even during a panic attack I can still talk and let everyone know why I'm feeling extra anxious. When I'm depressed or anxious, being around people and interacting seems to help a lot. Also I can live independently and hold down a job.


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26 Oct 2018, 6:20 am

Seba7290 wrote:
I think most of the autism community agrees that the functioning labels are highly inaccurate. If you met me on a day where I’m well-rested and my mood is good you would think I’m high functioning, but see me during a meltdown or when I’m really tired and stressed and you would think the opposite.

But the fact of the matter is that some people simply are more impaired by their symptoms than others. I still think it would be useful to classify the overall severity in some way. How would you go about this?


A very interesting question indeed my friend and a good question at that.

How should one measure Autism severity?

For myself, I have Asperger's Syndrome so by definition my level of severity is mild compared to Autistic Savants and classic non-verbal Autistics. I am able to live on my own, barely, and I currently have two jobs but holding down a job has always been a major and severe challenge for me. Since 1993 I've had more than 30 jobs primarily due to the challenging social deficits common to most Autistics so, would this classify my Asperger's as severe?

How much does Autism handicap my everyday life? Since I have 5 other neuroses to deal with, this makes the question much more ambiguous to answer. I do require a great deal of support and much of that support I cannot get at this time due to money and lack of benefits. So for me I consider myself, as well as my therapist considers me, severely Autistic, despite being just an Aspie. Many of my issues are currently not reaching a solution so my situation remains dire.

But, if I were classic non-verbal or Savant I would not be able to live on my own at all so perhaps I am simply an unusual Aspie.


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26 Oct 2018, 6:38 am

I guess the answer to the question how should we measure autism severity depends on answering the question what for we are mesuring autism severity.

I mean, for social accommodations and the extent of support required, something like functioning levels seems reasonable. It is not necessarily connected to severity of autism, other conditions (like physical and mental health issues) may play bigger role in overall functioning than autism itself.

I myself suspect there may be some in/on kind of thing underlying the whole spectrum and the great diversity of the spectrum would come from combining this thing with a number of individual characteristics and conditions, personal history and social pressures one have expirienced.


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26 Oct 2018, 10:49 am

I'd guess that there is a pretty good correlation between net wealth and how well an autistic does day to day. If you are poor chances are that you are put in much more stressful situations every day, which makes your autism worse. If you are wealthy you can create an environment that meets your needs.



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26 Oct 2018, 11:02 am

I think if we have to have severity levels, there should be five of them rather than three.

1 being least severe, five being most.

It would depend on how much support you need in life.

On that scale, I would likely be level 2, instead of being awkwardly less capable than many level one autistics, and more so than many level two autistics.


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Joe90
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26 Oct 2018, 11:18 am

I'd say I'm as capable as the average person, but my anxiety and overthinking causes me to come avoidant of certain things, and my anxiety is incurable because I suppose it's part of my ASD or ADHD. So in other words it can't just go away with meds, I'm going to be affected by anxiety in some way or another for the rest of my life.


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26 Oct 2018, 8:00 pm

How about separating severity levels from functioning levels?
Even if they relate, it doesn't always reflect the same way.


I dunno how specifically. It's just an idea that plays on my mind sometimes:
Maybe severity by usually long term and/or innate stuff like central coherence, IQ/EQ/SQ/VIQ-PIQ gap, comorbid conditions, physical/mental/emotional health, sensory integration and environment?
While functioning would be measured more from the practical real-life application of performance like by adaptive living, 'resilience' and coping mechanisms, developmental milestones, social skills, executive functioning and achievements?

Just anything to do with getting further from the usual 'if you're high functioning your deficits are ignored, if you're low functioning your assets are ignored' stuff. :|


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28 Oct 2018, 7:48 pm

Joe90,

I would say anxiety and panic attacks are a bigger problem for me as well, rather than an ASD.