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.

My breakdown of the autism Princeton study... part 4

I think I'm finally ready to get into the biological / genetic findings of the study.

But first, for context, so you understand the lens I am looking through and why my content can be trusted... (1) I'm not a scientist or biologist... but I do have a psychology degree, which included training in statistics and research methods.

So though biology is not my area of expertise, I do have formal training in reading and analyzing research. (2)

My breakdown of the autism Princeton study... part 3

Let’s talk about the why behind the gender distribution because a lot of people are understandably frustrated that nearly 80% of the participants were male.

But first, let's talk about where the participants came from. (1) There’s something called the SPARK database. This was part of a U.S. based initiative launched in 2016 to take autism research to another level. Specifically focusing on the potential biological and genetic components of autism. (2)

My breakdown of the autism Princeton study... part 2

In my last post I talked about the research uncovering 4 pattern clusters in the autistic sample group, which people are calling "subtypes," and explained why using the term "subtype" is causing confusion... (1) (If you're interested in my explanation of that, you should go look for part 1. 🙂)

In this post, I'll share what the patterns clusters actually were and how they were grouped in the study.

As I mentioned, there were 4. Two included developmental delays and two didn't... (2)

My breakdown of the autism Princeton study... part 1

Ok, let's decode this thing together. Because it's... a lot.

First thing's first... (1) 1. The study was conducted on a sampling of diagnosed children. Mostly male. 80-ish percent.

2. Racial representation was not explicitly looked at.

This means that the 5k+ people studied are not representative of the autistic population in general.

Next... (2)

A lot of people get parenting autistic children wrong. And I'm going to explain how in the simplest of terms.

They think autistic kids need to learn how to tolerate things they find intolerable, because... "that's life." (1) This could not be more wrong.

What autistic kids need to learn is how to tell the difference between something that can be changed and something that can't. (2)

I really dislike the whole "autism is a superpower" framing because it completely ignores the disabling aspects of it, but also because it feels like when people say that they're humoring us rather than celebrating us. I think most autistic people who have special interests are legitimately impressive in what they know and can do with that knowledge.

There are two areas of emerging research that change EVERYTHING about autism awareness... and I wish more people were talking about them...

1. A study found evidence to suggest that "mild" stress can trigger PTSD like symptoms in autistic brains (There's lots of nuance to the research that you can find in the study, I'll link to it below)

2. Another study found that autistic people experience a type of anxiety that doesn't fit any of the existing anxiety disorders currently included in the DSM (link below as well)

7 signs you might have distinct anxiety... the type of anxiety specific to autism that can’t be explained by any of the existing anxiety disorders currently outlined in the DSM.

1. If you get anxiety when you aren't able to talk about your special interests... For me, this happens anytime I'm bursting to infodump on my husband but also know he'd be completely overwhelmed by it (especially after he's had a mentally draining day).

So I have to make a concerted effort to not infodump on him, but inside I'm EXPLODING with anxiety.

3 reasons autistic people struggle with open-ended questions

Reason #1

About half of autistic people have alexithymia... which is the inability to verbally express emotions or feelings. So, "How was your day" can be a tough question for an autistic person to answer because they might not actually KNOW how they felt about it.

What people think ADHD is...

- Can't focus
- Physically hyperactive
- Talks too much
- Annoying (they won't say it, but they sure think it)

What ADHD actually is... A person who...

- Often struggles with organizing tasks, managing time, keeping track of belongings, and meeting deadlines

- Often avoids tasks that require sustained mental effort

- Often loses things necessary for completing important tasks

Today is exactly 1 year since I stopped drinking alcohol. Which is pretty huge. So in honor of this milestone...

I'm going to share the 3 reasons I used to drink as an autistic person... the reason I chose to stop... and why I'll never drink again.

Here goes... 1. The main reason I used to drink was to quiet my mind.

As an autistic person, my brain feels like it's constantly "on." Alcohol would slow it down, and I would get a break from my own thoughts.

(The brain feeling like it's always "on" is a common autistic experience)

7 reasons being autistic is so. freaking. exhausting.

1. We're in constant sensory overload

2. We're constantly fighting against our executive dysfunction to do basic necessary life tasks 3. Our brains are always on... we literally never get a break (research has found that our brains generate ~42% more information at rest than nonautistic brains... I talked more about this in my last post)

Did you know that autistic brains generate ~42% more information at rest than nonautistic brains, according to research? (link below)

This explains SO. MUCH. of the autistic experience...

Our brains are constantly in motion. (1) Think about that. Even when we're not doing anything, our brains are hyperactively thinking about things.

We don't get a break.

I suspect this has something to do with why we are often seen as self-involved. (2)

Autism is a disability.

Saying it isn't and emphatically demanding that it be called a "different ability" instead is harmful. (1) It's not the same as saying "I don't feel disabled by my autism" or "my autism isn't disabling to me, it's just a different ability."

And I'm going to explain why. (2)

11 misconceptions about autism that just won't go away... even though they're wrong, harmful, or have been debunked a thousand times. (Part 2)

A thread. 5 that I see on social media almost every day...

- Everyone's a little autistic

- Everyone wants to be autistic now because it's trendy

14 rapid-fire misconceptions about autism that just won't go away... even though they're wrong, harmful, or have been debunked a thousand times.

A thread. Autistic people...

1. Can't make eye contact

2. Are super awkward / would stand out in any crowd

3. Are rude in conversation

4. Can't be social or extroverted

My post about autism and cPTSD from yesterday seems to have caused a bit of confusion, so here are a few points of clarification.

cPTSD is complex trauma that results from many, repeated traumatic experiences over time. These experiences can be big, but are often (seemingly) small.

The main thing is that they happen consistently, which causes the trauma to compound (and increase) over time.

7 internal autistic experiences I wish more people understood...

(These are not universal, but extremely common)

1. We rarely meet people with the same interests and struggle to find things to talk about with them 2. We don't know what's considered socially "appropriate" and when we try to act "appropriately" we never quite hit the mark

3. We often end up with our "foot in our mouth" and have no idea how we got there or how to stop it from happening again

Autistic people don't lack empathy. We do experience it differently, though. And I think this misconception needs to be cleared up. (1) First of all, lack of empathy is NOT a feature of autism. In fact, the word empathy is not mentioned once in the autism section of the DSM. Not a single time in all 22 pages of it. (2)

11 signs you might be an introvert, according to WebMD... and why they can also all be signs of autism... (PART 2)

7. Introverts prefer to write rather than talk Many autistic people have a fear of being misunderstood (after frequent misunderstandings have led us to severe negative social consequences).

So when having real time conversations, we want to be as precise as possible to avoid misunderstandings.