My breakdown of the autism Princeton study, part 5

Ok, so now that I've laid out all the details of the actual study, I'm going to get into how it all relates to the late diagnosed, level 1, high masking, lower support needs version of autism... my version of autism.

Aka, the version that often looks like absolutely nothing but is rife with internalized anxiety.

There were two groups from the study that immediately stood out to me when thinking about my version of autism.

The Social/Behavioral group, which had visible autistic traits that tended to show up later in childhood, no developmental delays, and typically presented with co-occurring conditions like ADHD and anxiety.

And the Moderate Challenges group, which had the least visible autistic traits, no developmental delays, and the lowest rates of diagnosed co-occurring conditions.

To be clear, these are not universal presentations of autism. They are pattern clusters found for the specific group of diagnosed autistic individuals in the study... I explained this in great detail in part 1 of this series.

But, as a reminder, about 80% were male, and all were under the age of 18. So this was a very specific, and NOT A FULLY REPRESENTATIVE SAMPLE of the overall autistic population. 

Back to the two groups, I had several immediate thoughts when I first read about them.

1. Most high masking, lower support needs, late diagnosed autistic people would probably fall into these two groups, if studied. At least, that was my initial thought.

2. The term "moderate" is confusing because they're describing the group that had the least visible autistic traits, and "moderate" is usually used to describe something in between mild and severe. Which I don't think is the right way to describe this group.

3. I would probably have fallen into the moderate challenges group if I were in the study because my autistic traits are mostly not visible, and I don't have any formally diagnosed co-occurring conditions.

4. I bet the majority of people in the moderate challenges group (the group that had the lowest rates of diagnosed co-occurring conditions, including anxiety disorders) experience distinct anxiety. 

I've talked a lot about distinct anxiety before, but for those who don't know, this is the type of anxiety that doesn't match the criteria for any of the existing anxiety disorders currently outlined in the DSM and is directly tied to autistic brain wiring. (I'll link to the study below)

5. The study only looked at diagnosed autistic people. But what about the countless undiagnosed autistic people who don't have any observable autistic traits... because they've masked them so well that they're completely indistinguishable from "neurotypical" behaviors?

6. Those people will never be accounted for in research like this. I wonder if they'd show up in an entirely new cluster with different patterns. So, maybe there's an unaccounted for 5th group?

7. And what if this group doesn't "look" autistic because they've learned to mask so. well. but are unknowingly living with intense and overwhelming internalized distinct anxiety?

8. THAT'S what this type of autism should be called. Not high masking autism. Not lower support needs autism. INTERNALIZED autism. Because you don't see it at all, but it's causing daily overwhelming anxiety. 

Anxiety that, over time, can result in life threatening mental and physical ramifications like heart conditions and suicidal ideation.

9. And I bet this is related to the shorter life expectancy we already know exists within the diagnosed autistic community.

10. And I bet many people in this group will remain undiagnosed indefinitely... struggling without support, suffering without help... desperate but with no idea why.

11. I could use my platform to help those people find answers. Starting with coining this new term... internalized autism. Because this term serves a much needed purpose that no other existing term does.

So here we are. Here's the post. The one where I ask if this term resonates with those of you who have the same version of autism as me. The version that looks like nothing but is internally distressing on a near constant basis (when our needs are not getting met).

Internalized autism.