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

That makes total sense to me.

I totally get how frustrating it is when people think you're low support and immediately trivialise your needs. This is normally where I start with people before I overshare, and the conversation changes.

Low need (level 1s) defo need understanding and support, I'm sick of the level of gaslighting that occurs for people with low need (level 1), it's horrendous and sad TBH.

I think there needs to be another category below low or level 1s (or maybe a whole new grading system, who knows).

I have older and younger high-needs autistic relations and several low-needs autistic relations (all diagnosed), and it seems I'm the only level 2 in my family.

However, there are several family members whose brain wiring aligns more with neurodivergence than neurotypical; they are unlikely to meet the diagnostic criteria, but they struggle for connection and understanding every day.  I think they need to be acknowledged and have their own category. This would stop them from being linked to low need (level 1), which will hopefully reduce the scepticism and gaslighting of low need/level 1s experience.  But also, they should have the right to connect with like-minded people and be considered part of the neurodivergent community. I think we need to embrace them and celebrate them just as much.

I also think there are bigger issues, as from my experience, this non-need group do have needs that present similarly to neurotypical levels.  However, neurotypical treatment options (that are normally the standard route for them) often don't work particularly well.  An example is anxiety, treated with mood stabilisers, which just made the person's mood worse.  When treated with a low ADHD dose, the anxiety went away with no side effects. 

I've also seen family members just become happier with themselves now that they understand they are neurodivergent, they give themselves more grace, time and forgiveness and carry less guilt and burden.  They then start trying strategies instead of becoming overemotional or defensive.  Honestly, my diagnosis has had such a positive ripple effect for my wider family its been amazing and uplifting to watch (it's this group that seemed to have got loads from it TBH and without any intervention or support, just self-awareness).

You bring up a lot of great points why the point system is better than the support system, and I’m ashamed to say that I don’t have as many points why I somewhat prefer the support system. I especially understand that there does need to be a medium, as there are some that need more support than I but would not necessarily need “high” support.

MeMe said:

Do labels cause them heartache and exhaustion (like the lack of them does for me) or is it just more about identity and how they want the world to view them (they are more comfortable with it just being high or low)??

I think between these two options I fall more under the latter. Level 1 makes it sound like I need no help at all whereas low support shows that I do need some support. So it’s more of I would personally like to be viewed as low support rather than level 1. I hope that makes sense? I’m not sure if I do make sense lol

I think low/high works if you fit either one of those categories, what if you are neither low nor high but in the middle (like the USA level 2).

This is where I think low/high levels fail. I think everyone knows what high needs mean (in theory anyway), and low need again is a concept that is also easier to grasp (even if I think sometimes low needs are unfairly trivialised).

Neither of these describes or aligns with people like me, who are neither low nor high; we are somewhere in the middle.

This is my point about the current system working well for some but not others.

Most people just assume I'm low need because I'm high masking (which I can understand), but this means I have to then explain that I have higher needs, which often is greeted with scepticism until I explain the significant developmental delays I had in childhood and the hangover of these into adulthood. 

People generally get it in the end, but only after I've had to overshare my personal details just to get understanding and acceptance. This is both exhausting and soul-destroying in equal measures.  Having a label/level (level 2) would remove the whole trauma of having to do this over and over again.

I am keen to try to understand why others don't like labels and levels. I know some people are passionate about labels being minimal, and I need and want to understand why.  Do labels cause them heartache and exhaustion (like the lack of them does for me) or is it just more about identity and how they want the world to view them (are they just more comfortable with it just being high or low)??

Personally I prefer to use low/high support for labels, but my brain really likes the neat organization of using levels to categorize. So I’m really torn about it, honestly. So I stick with low/high support, but I don’t get offended if someone else uses the level system.

Whilst I see the point of levels and whatever the UK equivalent is, I just wish people would recognise that we can have problems in all sorts of areas that we don't always encounter every day, or have some very specific needs that are never addressed. 

Very true, I find this cycle occurs in most parts of life, so it makes sense.

Thank you for taking the time to explain and expand. I appreciate the level of detail and find your thoughts fascinating.

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.

It is an analogy with human evolution palaeontology, splitters see almost every new fossil find as a new hominin species and lumpers try to weed out too many species by looking at much physical variation as being within species (so you end up with fewer species).

The splitters in autism were in the ascendant 20 years ago, with Asperger's and classic autism and other sub-groups being recognised, then lumpers came to the fore with the 'autistic spectrum'. These things tend to oscillate between extremes, so we are due to a move towards splitting autism back into sub-groups.

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.

Hi Martin - my ASD brain is having difficulty understanding, what do you mean by Lumpers or Splitters?

Would levels be a medium option -lumped together as Autism, but then split up for the very high need, but not split off? Or is that just detail? (this is meant to be out of interest into your opinion of which is better, I hope it doesn't sound aggressive or argumentative)

Lumpers or splitters, take your pick.

You know I think you could be right with needing something to distinguish overhere in the UK. From the article yesterday about Uta Frith, having something clear that does at least mark the very high support needs might be beneficial so it's more clear on paper who has profound autism -it would also make it clearer to explain to the lay person that there is a difference, instead of the confusion saying low needs somehow detract from high need support when we really aren't.

I think there might be a term already for the one you have at your level 1 -I think it's BAP, Broader Autistic Phenotype. I dont' know if that's official language they use over here, but the definition is having the traits but not enough issues to be diagnosed ASD, like a sibling of someone who is, they share genes after all. Having proper language that is recognised would really help, whatever that looks like.