Research Context for Potential Participants
Does unsupported autism lead to acquired long term trauma in autistic people?
This is the exact question I've been circling for several weeks in most of my recent posts.
And after engaging with literally thousands of you on my theory that there's a causal link between autistic unmet needs and cPTSD... not just a correlation (what the science has been able to confirm so far) but causation...
Two things have become crystal clear to me...
1. This is a question that a SIGNIFICANT number of autistic people are extremely invested in finding an answer to...
In other words, this isn't just a personal question I have as an autistic person... the level of interest within the community to pursue an answer to this question is MASSIVE.
2. There is a huge amount of anecdotal evidence (even just shared within the comments sections of my recent posts, but that I have also seen showing up for years in online autistic spaces) pointing to the validity of the theory...
To be clear, this is not proof of anything, but information that has helped me more fully establish (for myself) that this theory doesn't just exist in the vacuum of my own mind...
I shared my theory to understand whether or not this was a problem worth investigating...
And what I discovered was far far more important than the question I was asking.
What I discovered after hearing from thousands of you is that autistic people all over the world are begging for answers.
Not that they are just somewhat curious about this question... but that within our community, many of us are desperately looking for answers...
Because life with unsupported autism is traumatic (many of us know this in our bones).
And from everything I have read over the past 2 weeks, it seems that many of us also _feel_ the direct link between this type of trauma and our cPTSD...
But can't articulate it. And our doctors don't understand it. And the science hasn't investigated it (yet). So we get stuck.
But being stuck is not just a minor inconvenience for us. It's daily anxiety, compounded stress in our nervous systems, and accumulated mental and physical health issues.
Some that become life-threatening. Some that cause such overwhelming internal turmoil that being alive feels intolerable.
Answering this question is not an intellectual activity for those of us living with it. It's an actual lifeline.
So...
What I set out to understand on June 9th, when I first introduced the possibility of conducting a study on this... I now understand more painfully than I ever imagined I could or would...
This research is not just wanted. It's needed.
Which leads me to the next monumental question in all of this, and one that many of you have understandably asked...
If such a huge percentage of autistic people have cPTSD, how can you possibly measure it? What are you comparing it to?
In research terms... where is your control group? (This is the group we would use as a comparison to the autistic/cPTSD group in the research.)
Because if we have no comparison group, how can we know if it's autistic unmet/unsupported needs that are leading to cPTSD and not something else entirely.
This is where the target participant pool becomes absolutely crucial in the equation.
We can't just study autistic people with accumulated trauma (cPTSD)...
We need a way to study the ENTIRE population. Not just the group we are looking to understand.
Or more specifically, again, in research terms... we need a *representative sampling* of the entire population.
So...
Autistic people with acquired trauma (the group we are looking to understand)....
AND
Autistic people without acquired trauma...
AND
Nonautistic people with acquired trauma...
AND
Nonautistic people without acquired trauma... (our control group)
AND
Nonautistic people with other neurodivergent conditions who have acquired trauma...
AND
Nonautistic people with other neurodivergent conditions without acquired trauma...
AND
People who are suspected autistic but aren't sure...
AND
People who suspect they have cPTSD but aren't sure...
BUT
that's not where it ends either, because we ALSO need to look at things like...
Is there acquired trauma from other things like physical/psychological abuse?
Is there acquired trauma that would meet the definition of PTSD (rather than cPTSD)?
Is there acquired trauma from being in a marginalized group that is actively mistreated and abused by social (and other) systems?
And that's not even close to an exhaustive list of everything we would want to factor in when we are looking at the data we collect from our research.
Which brings me to my next point...
When it comes to the research project we are in the process of launching, not only are we *not* limiting who can participate...
We CAN'T limit who can participate.
Because if we do, we will miss absolutely VITAL contributing factors when analyzing our collected data.
So...
If you're wondering if you might not be eligible to participate in this study, the answer is... unless there are legal/ logistical reasons that show up later... chances are extremely slim that you won't be able to participate.
In fact, the more people we are able to include in this study, the more accurately the results will reflect the reality we are looking to investigate.
But I want to circle back to something vitally important in all of this when it comes to the actual group we are looking to focus on... autistic people with accumulated trauma...
We don't just need diversity in *experiences* related to neurodivergence and trauma...
We need diversity of experiences related to....
- Race
- Gender
- Ethnicity
- Religion
- Sexual orientation
- Gender identity
- Socioeconomic status
And as many other marginalized identities as we can possibly include...
Because this is how we will be able to understand where and how intersectionality fits into the picture of autism and cPTSD.
Which is why we will be putting a concerted and dedicated effort into community outreach once the study has been fully designed.
(We already have a generous volunteer who offered to translate participant facing materials into Spanish, which will enable us to expand our reach into Spanish speaking communities.)
I know how massive this project is becoming, and though it can feel daunting, I also know it is achievable...
Especially with a passionate, dedicated team helping us bring this project into existence.
If you read this far, I hope you found this information helpful.
And if you have any thoughts to share, please do. We are actively and enthusiastically welcoming feedback from anyone looking to contribute to the cause.
More to come soon... 🙏🏻
And for those who are new here, I'm Nicole Filippone. Autistic philosopher of human difference and translator of the human experience.
Most of what I talk about on here is oriented around creating a better understanding of the internal autistic experience so we can change the way the world understands, engages with, and supports autistic people.
This research study is just one pathway towards achieving that goal.
If you find this type of content valuable, you're in the right place.
Welcome, and happy learning 🙏🏻