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Does anyone else like the USA level system (or is it just me)

MeMe

I don't often find myself preferring the USA medical or clinical systems, so this is a new one for me, but...

I have to say, for me, having a simple way to say my level of autism quickly would be extremely helpful (I'm wondering if this is just because I still have speaking and language challenges).

I understand that they are limited and don't give a true picture of the level of support needs that exist for autistic people, and everyones experince differs and can not be placed into 3 simple boxes, but I think there is a place for them.

For me, the levels would allow me to quickly say to people, mainly professionals, what my support level is (not my support needs, just the level).  It would reduce misunderstanding, conflict, frusutration and gaslighting, and it would reduce the trauma I experience.

I also feel the levels should be updated, as I believe there are more than 3.

I think at least 4 should be introduced, I think:

Level 4 - Profound Autism and High Need (with or without intellectual disability)

Level 3 - Early Developmental Delays and Significant Need (with or without intellectual disability)

Level 2 - No Early Developmental Delays and Moderate Needs (similar to the old Asperger's profile)

Level 1 - Not meeting diagnostic criteria but recognised Neurodivergent brain writing - low or no support needs (I think it's important that this is clinically recognised as it could help people manage their mental wellbeing better with better understanding and better treatment options).


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  • in reply to Martin

    I get it now, thank you for explaining. I really struggle with Metophors.  

    I suppose there will always be positives and negatives for labels and non-labels, and always the risk of misunderstanding either way. 

    An example is the 'Autistic Spectrum' label itself, the amount of time I hear "well it's a spectrum, so EVERYONE is somewhere on that spectrum" (as in every single human being is somewhere on it), you wouldn't believe.  I've even had Doctors (Consultants) in hospital settings saying this to me!! 

    You wouldn't believe how many times I've had to try to explain that it's a spectrum of Autism and not a spectrum of human brain wiring from Neurotypical to Profound Autism.  Even after explaining the lack of belief often lasts until I ask them to tell me the name of the Spectrum and ask them to tell me what this name is describing.  Sometimes I just give up and accept its to confusing for some people to understand.

    From my own experience of trying to navigate the world, I personally would like something that helps me to navigate the barriers, particularly around communicating my level of need, and I honestly think the benefits of a label would outweigh the negatives for me personally (I understand others may have a different perspective, journey, and preference).  I'm also conscious that parents of people with Profound Autisum would like something that indicates the severity of their loved one's presentation.

    I was just interested to understand the wider community's thoughts.


  • in reply to Cinnabar_wing

    I think that if levels guaranteed the right type and extent of support they would be useful, but just as a label they don't add much that improves things.