I know a lot less than most about this, but I still don’t get it. I see so many posts like yours that I’m scared to stick my head out in case someone will bite it off, but…

Autism is called a syndrome because it involves a combination of symptoms and behaviors that typically appear together.

Disorder not a syndrome.

I’d like to think it’s neither but our lexicon needs an update in general

Good point, as part of late diagnosis is to learn the language around autism.

My understanding of the difference is that a disorder refers to a specific, identifiable medical condition with known causes and defined symptoms, while a syndrome refers to a group of symptoms that occur together but may not have a single, identifiable cause.

I am being my literal self and my diagnosis is Autism Spectrum Disorder.

Where perhaps it gets tricky is that the causes of the symptoms (that are used to define autism) are polygenic. So it’s hard to untangle to what extent they have a common genetic root. The fact there seems to be overlap with general neurodivergence makes it even more difficult.

These symptoms differ in intensity and presentation across individuals, which is why autism is described as a spectrum.

If the symptoms are subclinical, meaning they are mild and do not significantly impair daily functioning, the person may not meet the criteria for a formal diagnosis of Autism Spectrum Disorder.

We've evolved beyond that definition of Autistic But you're not wrong about (lowercase) autism spectrum disorder F84.0 having a VERY strict criteria with intense diagnostics involved but there's more to it than that...

And yet many people identify as autistic without a formal DX. Which is fine by me, but how can they be sure they’re not subclinical? i.e. a little autistic

Research suggests Self-ID'd autistic folx are usually correct about it, in a way that is statistically compelling and pretty shocking tbh If you don't need what requires a medical dx, why waste time and thousands of dollars? Knowing that you are Autistic reduces risk of suicide We deserve to know

But I still have not seen a definition of autism that ticks all my boxes / answers my fundamental question….

I think that’s because we’re sort of figuring that out right now We all have strong opinions, personal and professional experience, and differing values And we’ve only really come to understand how many of us there really are Stay tuned!

If the various traits exist in an individual at a level that makes a diagnosis borderline, then the idea of a clear-cut line makes no sense. In which case the claim that either one is autistic or not doesn’t make sense.

It’s a culture and an identity. Not just a thing disorder Like how being gay and then trans started in the DSM and is in the process of being de-pathologized right now It’s an exciting time 💪🏼

Which is why I challenge the idea you can’t be a ‘little bit autistic’. In the same way sex and gender are not binary. Perhaps in time the very idea of autism will disappear, broken down into its many neurodivergent components which also exist individually outside the classical definition of autism.

I agree, I read an article (or was it a paper journal) about that statistics before, and it was indeed pretty shocking that there's a high rate of getting it right for those who self-dx'd, when many assumed the reverse.

I think it speaks that those who self-dx'd are honest to themselves. And in a world of stereotypes and discrimination, who wants to be one? We did it because it's a personal discovery and journey for us who are already adults.

We already survived. We already found our own ways. We're masters of masking already. Taking a self-dx at this point is an affirmation first (at least for most) before the government support (if any, and if we want it).

Getting it wrong is more realistic (and beneficial?) than lying to ourselves. I think that's one reason why there's a high rate of correct self-dx, other than we already know ourselves, we just don't know there's a "label" for it (it was my experience, I didn't know it's called autism!)

And how about those individuals who have these symptoms in much greater intensity - are they not more autistic?

I understand (I think) why the community pushes back hard on people who say ‘they’re a little autistic or a bit on the spectrum’. But I wonder if we’re possibly oversimplifying things in order to avoid grappling with uncomfortable questions?

No. I am sick of people appropriating our experience and gaslighting us. "Oh EVERYONE is a bit like that!!!!!!!!!" I did not have any sexual relationship till very briefy when I was 27, and then none till my late 40s. Is everyone "a bit like that"? Rubbish.

It’s too much to explain in skeet form but I recommend the book Unmasking Autism by Dr. Devon Price if you’re sincerely asking It’s a great place to start 🫶🏻

Made me smile, I started reading it last night.

I think we’re not asking the right questions.

I think thresholds can be difficult thing as where you draw the line, or weight individual components can be arbitrary. Would ‘does the sum of all things that make you think you’re a bit autistic have an everyday detrimental effect on how you function in a neurotypical world?’ be a better question?

Yes, I think we’re all sort of trying to figure out where those lines are in realtime, through conversations like this. 🫶🏻

Indeed. I have a suspicion you’re exactly right here. Mt take is we are looking at the wrong end - the symptoms rather than what causes them. (Which is clearly incredibly complicated)

I gave a talk today (maybe you saw) where I talked about some of this and I’m hoping to do another similar thing soon We all are weaving this together in realtime It’s tricky with shared language to describe different things and a lot of trauma with Big Feelings More to come!

What you failed to understand is a diagnosis consists of clusters of symptoms occurring consistently. As applied to autism, this cluster is merely the outward expression of an internal experinece. This is a very important distinction. This is why the "everyone is a little autistic" thing is so

📌

harmful. We autistics process information in a different way than non-autistics. This is where internal experience becomes important. We experience and understand the world differently. If I recall correctly we are processing 80% more sensory information than non-autistics. The problem is we are

Simply put autistic people are different from non-autistic people on a neurologicial level in ways we nor they will ever be able to understand.

Running the same processor non-autisrics are. This leads to us, at times becoming easily overwhelmed or overstimulated which presents outwardly in ways similar to many symptoms shown by neurtypicals. This is another important point. You can have any symptom an autistic person outwardly expresses

It’s a lot more complicated than that. Our traits are not static. They vary based on external environment and internal (eg ageing). Also co occurring conditions muddy the waters. At the moment we have Autistic - a diagnosis that is a subjective opinion given by a (usually not autistic) person.+

+ That’s something you either have or don’t have. Yes there is a grey area of people who don’t quite meet the criteria in someone’s (subjective) opinion. Or people who don’t have a formal dx but have done the research. That’s not the same as a person saying “we are all a little bit autistic.”+

+They aren’t talking about a small number of borderline people in that conversation. The point is, the effect of those words in that conversation is invalidation of the autistic person’s experiences. It’s rude to say something that dismisses their very real issues when someone discloses to you.

I am late diagnosed, so my experience is limited, but I disagree. Outwardly I’ve kept it together (until recently) but inside I’ve been in turmoil my entire life. Even so, I don’t find those comments rude, nor do I always consider those people are dismissing my issues.

TL/DR: everyone can have subclinical symptoms of autism, but what makes a person autistic isn't the symptoms themselves, it's when those collective symptoms cross the line into becoming disabling.

They may be. If that’s the case though, it’s still not helpful to say “we’re all a little autistic,” bc while they may be, that doesn’t mean everyone is. “WE’RE” is incorrect. Should be, “oh, maybe I AM also on the spectrum a little bit.”

You could be right. But this seems more a question of semantics.

It changes the framing. Instead of you’re just like everyone else, it’s, I may be a little like you.

As in “I may be a little autistic”. I know these comments are controversial (and I’m not trying to start a flame war), it’s just that as a person who is dx’d as autistic, this argument doesn’t gel with me. Perhaps I don’t understand enough.

Or they are getting the accommodations. You either are or not

Hmm… that's a tricky view/take. If we're going to go by the clinician guidelines, the "subclinical" is Level 1, formerly known as the "Asp… Syndrome", is it not? And the rest, in the former guidelines, who are "below" that were classified as "high-functioning not clearly identified" (something)?

It may be entirely wrong. I only recently became aware I am autistic, so I’m struggling to understand it. I’m beginning to see it differently now - perhaps as a different way of thinking and understanding the world that presents with different ‘traits /symptoms’.

Ahh! It's okay. It's part of the process in our journey in discovering more of ourselves, and how it all plays out beyond ourselves. It's a bit confusing at first. Hmm… I would explain autism as like a coin. One side is outside or behavioural, what clinicians usually observe.

The other side is inside, the way we think, the way our brains are wired. This side is what Neurotypicals (non-autistics) often missed. So whenever they say that "we're all a little autistic", they often only understand the observable behaviour. The outside.

They fail to understand that there is an inner side to being an autistic person. We think differently. We get drained of energy faster. Many have various hyper senses (and can get annoying in certain situations). We go on meltdown, the NTs rarely do. We can also shut down anytime anywhere.

Many can't read facial expressions beyond the basics. It can take time to recover after a meltdown, shutdown, burnout. And more… Which most NTs don't experience. So when NTs say, "we're all a little autistic", it usually is offensive because they have no idea what we go through every day. 😉