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

Let’s talk about the why behind the gender distribution of the study 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. 

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. 

So, in order to study the biology and genetics of autism, SPARK collected data from families across the U.S. with at least one formally diagnosed autistic child. They collected research participants in combinations like… 

• An autistic child and their biological parents

• An autistic child and their nonautistic siblings

• Twins that are both autistic, one autistic & one not, and even both nonautistic to include as controls

• Other multiples where one child is autistic and the others aren’t 

To be very clear, because this is an extremely important detail, all the autistic participants were formally diagnosed.

They were all also under the age of 18.

This means that there were no self-identified or late-diagnosed autistic participants. 

This is absolutely KEY in understanding the findings of the Princeton research. But I’ll get back to that in a minute. I have a bit more to share about the SPARK database.

As of today, it currently includes nearly 330,000 individuals. 

Now, here’s where the gender component comes in. When looking at just the autistic participants of the SPARK database, the gender breakdown is ~80% male to ~20% female.

This is not because an egregious error was made when building the database. 

It’s because this gender distribution reflects the current diagnostic patterns of clinically diagnosed autistic individuals… 

NOT the actual prevalence of autism.

And it’s absolutely CRITICAL to understand this when looking at studies that used this database as a source. 

So now, let’s talk about how this relates to the Princeton study.

The Princeton study pulled data from a specific subset of the SPARK database. They looked specifically at 5,358 children all from same-sex twin pairs… and again, all under 18 years old. 

Some of the twin pairs were both autistic, some were mixed, and some were both nonautistic. Structuring the study in this way allowed the researchers to examine how certain autistic traits cluster within the autistic participants as compared to their nonautistic siblings. 

Now, given that the Princeton study participants were pulled from a database where the diagnosed participants were ~ 80% male, it makes sense that the resulting gender distribution would be similar.

Which is exactly what happened in 3 out of the 4 groups identified.

But again, it’s EXTREMELY IMPORTANT to understand that this dataset only included formally diagnosed autistic children under the age of 18. 

No self-discovered or late-diagnosed autistic adults. 

This means that the vast majority of us talking about this study on social media, right here… right now… were not represented in the research at ALL.

To be perfectly clear, this DOES NOT invalidate the findings.

It just makes them relevant in a VERY SPECIFIC context.

Which is what the researchers said in their discussion of this study.

They did NOT suggest the results are universally applicable. 

In fact, they said the exact opposite. That the study shows biological and genetic patterns related to autism for THIS SPECIFIC GROUP. 

Not patterns we’d necessarily expect to see if other autistic groups are studied.

And that the patterns indicate there is a biological and genetic connection… one that they believe deserves further research. 

Again, none of this invalidates the research… 

How it was conducted... or its findings.

And the published study most certainly does NOT suggest that the researchers are stating “conclusively” that they “discovered all the different subtypes of autism.” (Which I have seen many people say in online autistic spaces.) 

So if you don't see yourself in the results of this study, it's not because they are incorrect, or because the research was inherently flawed.

It's also not because you’re a sole outlier as a diagnosed autistic person who just doesn’t fit the data. 

It’s simply that the research was conducted on a very specific subset of autistic individuals which was carefully explained by the researchers as NOT representative.

And for those of you who may be questioning your self-diagnosis because you don’t fit the results… 

Please understand that this research does NOT mean and should NOT lead you to conclude that you're definitely not autistic.

Because, again, not a single late discovered adult (formally diagnosed or otherwise) was included in this study. 

I know this was a lot to unpack, but I sincerely hope some of you found clarity in this explanation.

I still have quite a bit more to share about this study, especially how it’s helping me understand myself better as a level 1 autistic person. 

But I did feel setting the record straight about this was important before digging into the results.

Let me know what you think about all of this… I’d love to know. 😊