Why there is so much confusion around what autism is and isn't
After years of trying to make sense of it myself, I'm realizing that there are actually two separate, but related aspects of autism...
But most people think of them as one thing, muddled together. (Including myself, until pretty much right now 😅)
The first aspect that I think needs to be seen as its own thing, is how autism presents. In other words, how it looks to the outside world.
The second is how much support a person needs.
Which doesn't always match what the outside world expects, given how a person's autism presents.
(A lot of autistic people who look "just fine" actually need a lot more support than the average person would think.)
And this is why I now think that the two need to be seen as separate/distinct, but related aspects of autism.
So, with that in mind, I see both of these existing on their own separate continua.
(I'm using the word "continua," plural for "continuum," instead of spectrum/spectra intentionally. Bear with me for a minute).
Continuum 1... how autism presents.
On one end of this continuum is a completely invisible presentation of autism. This is what I've been calling "internalized autism."
And on the other end of this continuum is the exact opposite. A completely visible presentation of autism. For now, I'm going to refer to this as "externalized autism."
And I think the vast majority of autistic people exist somewhere in the middle.
Where most of us have a mix of internalized and externalized presentations. Some more visible, some less. But mostly mixed.
Now, to make things even more complicated and difficult to understand, I think that how much support a person is getting impacts where they show up on this continuum. (Not how much support they need... how much they are actually *getting*)
So, someone who is not getting any support, whose needs are mostly unmet, will show a more externalized presentation of their autistic traits.
And someone who is getting all the support they need, whose needs are mostly, if not completely met, will have fewer visible traits.
As an aside, I think the reason a person whose needs are met will likely have fewer visible traits has to do with the way autism is diagnosed. But let's put that aside for now. I'll come back to that in another post.
Back to internalized autism...
There are many other reasons a person could have invisible traits, and I think most of those reasons have to do with hiding them for survival.
Which is where I think most high masking, lower support needs autistic people exist. And where I see myself existing.
So, that's continuum 1. How autism presents. Aka, how it looks to the outside world.
Now, let's talk about continuum 2.
As I mentioned earlier, this continuum has to do with how much support a person needs.
Before I explain how my continuum version of this works, let's review the current framework as outlined in the DSM.
As of 2025, the DSM breaks support needs into 3 levels.
Level 1... requires support.
Level 2... requires substantial support.
And level 3... requires very substantial support.
The problem with this framework (imo) is that there is no clear distinction between the 3 levels.
In other words, what puts someone into level 1 vs 2 vs 3 is extremely vague and confusing.
Which leaves almost everyone, even clinicians, scratching their heads when trying to place someone into a level category... especially when trying to decide between level 1 and 2... and level 3 and 2.
And I think a lot of people who were given level 2 designations in their diagnoses are even confused.
And in the 4 or so years I've tried to gain clarification on how the levels are determined, the best response I've gotten has been a shrug and a reference back to the DSM language. Which, again, is vague and confusing.
Ok, so this brings me back to my continuum concept.
If you look at support needs as on a continuum with two poles, where "requires some support" is on one end and "requires very substantial support" is on the other... this loosens up the current relatively fixed framework.
(Technically, the current DSM language leaves room for fluctuation, but in practice, that's not how the levels tend to be used.)
The continuum concept, on the other hand, allows for a person's support needs to be variable. So support needs can be used as an expression of what a person needs at any given moment.
Further, the current DSM framework breaks support needs into two categories (matching how the criteria are currently listed). 1. Social communication and 2. Restricted repetitive behaviors.
But if a person requires very substantial support in one area but not the other, they still require very substantial support overall. Which is what matters when support is being requested.
So, if you look at support needs holistically rather than categorically, you end up with a much more useful measure that can be communicated when support is being requested.
Reflecting the highest level of need a person has... which can then be used as a contextual starting point when service needs are being evaluated.
And then, what supports/services are *actually* needed becomes the next discussion point. Which has to be highly customized anyway.
Even right now, under the current support levels framework. If you have two level 3 autistic people, each will have different support needs. Because, by definition, support needs are specific to the individual.
All this to say, I think this way of understanding autism would move us light years ahead in autism advocacy.
Because right now, everyone seems to be getting left behind. High support needs, medium support needs, and lower support needs autistic people alike.
And this is painfully evident just by looking at the online discourse between lower support needs autistic adults and parents of higher support needs autistic children. Painfully. Gut wrenchingly evident.